Multiple Sclerosis - My First Symptoms
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- Опубліковано 9 бер 2016
- Multiple Sclerosis (MS) - My First Symptoms.
(VIDEO 1)
In this video I share the onset of my very first symptoms of Multiple Sclerosis before I even knew it was MS or had a diagnosis. It all started in 2007.
Early Symptoms started 2007:
1. Numbness.
2. Burning.
3. Tingling, humming, buzzing.
4. Skin sensitivity or Altered Sensation.
5. Squeezing sensation especially in the Legs.
All of the above across my Feet, Legs, Hands, Tummy and Back.
New Symptoms starting Feb 2012 (Major attack)
1. Weakness.
2. Spasticity.
3. Abnormal Gait (walking as if drunk).
4. Extreme lower back weakness.
5. Severe Chest Pain.
6. Anxiety.
7. Tremors
If you've enjoyed this video and you feel that if may help another person in some way, please consider SHARING it on your social media - Thank you.
Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
Neil, I was diagnosed with CIS/MS in 2012. It took awhile to get the diagnosis. Do you remember signs/symptoms that were there years before your 2007 episode? I look back and believe that there were signs of MS going way back to over 20 years before my diagnosis. Besides intermittent fatigue for most of 20’s, I had my back “cease up” on me for about 24hrs after a all night term paper typing marathon. The point I have is that MS doesn’t just develop in a matter of weeks. The lesions are evidence of a longstanding disease. To this I attach idea that MS could be caught early by screening and possibly treated more easily. My aunt was diagnosed with MS in the 50’s and my family is/was uninformed of the risk factor of having a relative with MS. Maybe if they were aware of how MS runs in families they could saved me years of missing work and confusion. Anyway, thank you for your story. It shines a light on the disease very well and brings about awareness. 😊
Hi Kevin, and thanks for commenting.. I've often wondered this myself and tried to recall any symptoms prior to them starting in 2007. Nothing really springs to mind apart from being tired a lot, but I put that down to busy working/family life (at the time) which happens to a lot of us. I also get where you're coming from with respect to the condition and screening etc, for me my symptoms seem to start after having a really bad chest infection. That may or may not have been the trigger, who knows. I'm glad you enjoyed the video.
Thank you for sharing!! I was diagnosed in 1992 and probably had symptoms since 1987. 25+ years with varying yet similar symptoms but I live to defy this disease! Good luck and prayers for you....
Thank you Melisa, I was just reading my iPad as your comment notification popped up.. hence the swift reply. So good to hear from somebody such as yourself with many years of experience with this horrible condition. You are an inspiration to many.. I'm struggling so much with walking at the moment because of weakness in my back which I'm convinced is caused by the MS effecting the core trunk muscles. I worry about the future, and my quality of life.. it seems to be very progressive at moment. What would you say is your main issue caused by the MS?
Thanks for the comment and take care.
How so? Any life tips/habits?
X
You are a strong woman 💖
@@NeilBradleyMS how are your lungs....I'm not dx with MS...yet...mostly I have pain in my lower back ,,my thigh muscles ,,,no balance at all...my hips are bad as well,,and I have terrible post nasal drip and always have to clear my throat...I'm not chewing my food well enough because it gets stuck in my throat.....and burning in my feet..
Also how about chest pain and pluralsey....I've had it very often in the last six years...
Bless you. You are very brave talking about your MS
Hello Fran, thank you! :)
I have MS since 2002. I’m now on Ocrevus every 6 months. I’m due my next infusion July 21. I’ve been on many many different medications down through the years. I’m really tired of all the medication and different problems I’ve had with MS. I’m now losing my teeth due to severe dry mouth. I’ve gotten worse down through the years. Now I’m having seizure activity. I’m a retired Nurse which I know some medical knowledge about MS. I’m just like the DRS which are learning about new items everyday also. I always say we learn new items everyday.
Dear Sir, your description about your problems is very vivid and helpful to others assess about their problems somewhat similar to yours. I pray to god to shower his blessings on you for a better health.
NK
Hello Sir! Thank you so much for your kind message, it is very much appreciated. Blessings and goods health to you too - all the best - Neil.
Thank you for sharing your story. It's always good to hear other people, as it does give hope that even with MS we can still have a reasonably good life with modifications to our lifestyle. Plus, that not everyone is going to have the same systems so may not suffer as much. Bless.
Hi Jim, you’re welcome. If I’ve learned one thing since having MS and doing my channel, no two people with MS are the same. Yes we have to adapt according to circumstances, and the aids are available to us if we need them. I’ve needed them recently, but fortunately doing much better at the moment. I hope this message finds you well Jim. Best regards - Neil.
Neil excellent video, i have had ms since in my 20s i am 48yrs now.Feet paresthesia is so painful and annoying. Like you i have a wonderful wife that keeps me motivated together with my kids. I just started using a cane still work an 8hr job. My good friend has an uncle who just turned 85yrs he has had ms since when he was in his 20s.We have good wives Neil cherish them.😎
Hi Shawn, thanks for the lovely comment. Yes indeed, we are blessed to have unbelievably fantastic wives don’t we. Since making this video quite a number of years ago now, I have actually been re-diagnosed with a more sinister autoimmune disease called NMO, which is short for neuromyelitis optica. The pain is often relentless and my mobility is worsening on a frightening level. Ten years ago I was at full power, now I can barely walk down the garden.
I’ve learned that MS can affect people in many different ways, and like your friends uncle can in fact remain quite static over the years. I’m pleased to hear you’re still able to work, that really good, and very motivating for you. All the best - Neil.
Yes!! This is what I’ve been feeling! Vibrating, tingling, numbing, burning and itching sensation. Whole left side first. Now it’s everywhere, even my tongue. Aching pain as it’s progressed.
Hi There, I'm very sorry to hear you're having to deal with these horrible symptoms. I hope you're managing to deal with them best you can. 🙏
Me TOO! off & on though..middle of the night usually❤
H Karl, thanks so much for sharing your story. People just don't understand how difficult MS is. I too, have been dealing this since 2007, 43 years old right in the prime of my life.
Hey Tonia, glad you enjoyed my video.. I know exactly what you're saying, I feel it's difficult for people to understand what they can't see. I look perfectly well, until I start to walk that is, then the penny drops. Wow, yes same here.. I'm also 43 (44 next week) and have been having problems since 2007. I'd be very interested to hear about your first symptoms and how they progressed.
Also, I've got several more videos you might be interested in watching if you have the time (check out my MS Vlog playlist). You might find some of my most recent one's quite interesting because I'm now in a transitional stage to secondary progressive. Best regards - Neil.
Wow, 2007, pretty much the same time as me. Thanks for sharing, sounds like youre in the midlands! Im a ten year MS Veteran, really enjoyed your video. Thanks,
Hey Terence,
Thank you for your comment, and thank you so much for your subscription also.. very much appreciated.
Aha, yep you got me .. the East Midlands to be precise. Wow Ten years! I've just been on your channel and added your videos to my Watch Later which I'm looking forward to doing, but not this evening as its already 11:15pm! Even though I've only been diagnosed since 2013, I've been having symptoms since 2007.
Super pleased you enjoyed my video, there plenty more.. in fact there is 26 videos altogether in my MS Vlog.. Seems I've been rather busy in the last 9 months or so.
Cheers - Neil.
I have the same issue with my hands, I have had the issue for at least 6 years. Dismissed at every doctor. I’ll keep trying. Thank you for posting, I wish you the best ♥️
Thank you, and I’m sorry to hear you have issues with your hands. This video is quite old now, but I’m assuming your hands are burning and red with nerve pain, as we’re mine. This has now calmed down somewhat with my hands, but never goes completely. It is caused by a lesion on my cervical spine (neck). Some Doctors literally just don’t know what they’re talking about, I often feel I know more than them myself. My advice would be to perhaps to try and convince the Dr’s to give you an MRI scan, this will show up any problems with your spinal cord etc. All the best to you. 🙏❤️
I just came across your video and watched it. I have tears rolling down my face because you just described me. I'm going to take a break before I watch the next video bc I too have TM and I'm very close to the MS diagnosis. But I have so many other tragic things going on in my life that I'm about to lose my mind. It took me 7 years to get a doctor that took the time to do the scans.My GP was the terrible doctor you described that just kept telling me to wait and let's see what happens. To this day I can't stand him. I will be in touch but I know you are about to make that difference in my life that I've prayed for every night. My husband thought I was being dramatic and no one seemed to believe me.
Hi Deeann, thank you for contacting me.. I’m so very sorry you’re currently going through a bad time. Seven years is a ridiculous amount of time to try and get diagnosed, but nobody should have to battle for so long, and I’m sorry you’re going through this. As you say I feel sure this was down to the incompetent GP, to tell you “let see what happens” is just crazy, they should be struck off. So sorry.
Yes, so I’m guessing you can relate to my first video then? I know it doesn’t change things, but I hope that it made you feel a little bit better knowing you’re not alone with all these horrible symptoms. This is why I made the video in the first place, to reach out to people such as yourself.
I’d be very interested to hear more about what’s been going on with you. To learn more about my journey you may like to check out my playlist entitled “My Life with Multiple Sclerosis”. There are well over 30 videos, a lot of them vlogs over the last couple of years with me babbling on about what’s been happening with me.
I wish you well Deeann with your quest for a diagnosis, it took me a while also but please don’t give up. Great to hear from you and I’m here if you need to have a chat or I will do my best to answer any questions. Take care - Neil.
Your first video lives on in June 2020 and is blessing me friend! I thank you... I have all of these symptoms, am fifty and remain undiagnosed. Have gave up on doctors though the debilitating pain and suffering is too much period! Please pray for me of you're a Jesus man
... Thanks again! jackie
Hello Jacqueline, my apologies for the late reply .. take me a little while to get through all the comments once I put a video out, but I like to respond to everybody if I can.
I'm so terribly sorry to hear you're constantly in so much pain, and un-diagnosed as well. Your words are very familiar, lots of people on this channel tell a similar story so you are not alone. It's not hard to loose faith in the Dr's under the circumstances is it.
Thank you so much for your message Jacqueline, sending many blessings and prayers to you - take care now. - Neil & Teresa.
This is terrifying and interesting at the same time. Best of luck wish u all the best.
Yes indeed, it sure is. Thanks for watching, best regards.
thank you for this video, you are an incredible narrator. hope you are doing okay!
Thank you so much for your kind words. This is in act my very first video as well. Since then I’ve done over a hundred more. Thank you for taking the time to watch 🙏 I’m not too bad.. I hope you are doing well too.
Always a supporter!
FIGHTING Multiple Sclerosis Thank you, means a lot. 🙏
I have MS, and I am starting to watch all your vlogs. I remember my first MRI, I ended up going to sleep during my MRI because it was so late at night.
Hey Jamie,
Thank you very much indeed for your comment, I really appreciate it. Wow, you actually fell asleep during an MRI!! No way - you must be a very heavy sleeper that's all I can say, MRI scanners are extremely noisy machines.
I'm sorry to hear you have MS, not the best news is it.. I hope that you are managing it ok and that you have your symptoms under control.
Kind Regards,
Neil.
Jamie, to help you out a little bit here is a link to my Video playlist.. that is if you haven't already spotted. Hope you enjoy, and I'll be happy to answer any questions you may have.
ua-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
Neil.
Good clear concise, informative. I Thanks for this all the best to you
Hello Kim, thank you so much!! This was my very first video some five years ago now and a lot has happened with my journey since then (documented in later videos). I really appreciate your kind words, and I'm super pleased you found the video helpful. All the best to you.
I appreciate the video i am a 53 yr old male who has been experiencing the exact symptoms for 15 yrs a recent mri found that i also have ms i thought i was crazy with the symptoms i was having and your right the sensation in my body i could not describe the sensations as you described very well thank you scott in east tn usa
Hello Scott, thank you for the comment and for watching my video.. I really appreciate it. Yep, the symptoms can be very difficult to describe to other people can't they. Scott, if you have time you may be interested in watching some of the other videos I've done in my "MS Vlog Playlist", you can access them by clicking the link I've provided below. I cover various other "real life" MS related topics. I hope you're managing your symptoms ok and the MS isn't causing you too much distress, take care my friend.
ua-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
I’m watching your story! Thank you very much for trying to console all of us when you are going through this and you need the consolidation💖I’m very very very sorry you had to and are going through this:( my sister is going through something a whole year and no dr is telling her what it is:( they said she has an over active immune but they won’t say how to fix or what it is that’s wrong with her:( she can’t get around like she used to:( she walks but like you, her feet have been hurting her for a few years and she can’t stand too long and she describes her legs as “ heavy” i don’t know what to do to help:( it breaks my heart because she saw so many professionals like you have but no one can help her:( I wish someone can help
Hello Jenna, and thank you so much for your message and kind words. I'm so terribly sorry to hear about your sister, and the awful symptoms that she is suffering with. I can really appreciate how difficult this is for you wanting so desperately to help her, but not only that how scary it is not being able to get the concrete diagnosis.
I too have an overactive immune system, so for me this means my immune system is attacking healthy tissue, tissue that it should be leaving alone. As a result, my body is being damaged by itself. I'm not sure if you know but this is considered in medical terms as an auto immune condition. There are lots of different Auto-immune conditions, MS being one of them, Arthritis is another and also what I've recently been diagnosed with Neuromyelitis Optica (NMO).
I'm no Doctor, and I'm certainly not qualified to diagnose your sister but I can tell you this she certainly does (from what you've said) have some significant neurological symptoms going on. However, it's important to remember that these symptoms can also be caused by other things such as a bulging disc in the back. This is what they thought was causing all of my issues back in 2012, however unfortunately for me it did turn out to be a red herring because when they fixed the disc my symptoms remained. However I will say this .. LOTS of people on my channel have written to me describing similar symptoms and it HAS turned out to be a disc issues pushing on the spinal cord, so please don't loose hope.
It does sound like your sister already has had many tests, but I'm not really sure why the Doctor's won't give her a diagnosis, perhaps they don't properly know what the matter is yet.
You may be able to tell from my videos, but I'm very analytical and I do my research thoroughly and even though I'm no Doctor I will say to you what I say to everybody else when discussing this kind of topic. I would want a full body MRI, this would include HEAD and FULL SPINE (Cervical, Thoracic and Lumbar). Then depending on the results possibly a Lumbar Puncture and blood test. I would also advise you and your sister to do some brain storming to try and remember when the symptoms first started, did they get better? how long did they last, are they still here now? Time and Date everything however small and insignificant they may seem. Keep this journal going from today if you haven't already. I've learnt over the years that trying to diagnose an auto-immune disease HISTORY is extremely important because certainly for MS there is no definitive diagnosis technique. It's more about ruling out certain things, which is where the history also comes in.
Know that both Teresa and I are thinking of you and your sister and wish there was more we could do. Sending thoughts, and I hope this message helps you in some way. Please let us know how you get on. 🙏💕
Neil, thank you for taking the time to post this video. I recently within the last 2 months have had symptoms similar to what you described with your right foot and leg. Is there a possibility I could email you further about this?
Hey Christopher, yeah sure you can contact me at neil.bradley@hotmail.com or you can just message me on here. Cheers.
Excellent video Neil, thank you considerably
Thank you Andrew, glad you enjoyed it. You might like to checkout my "MS Vlog Playlist" where there's an additional 9 videos to watch. Best regards - Neil.
I will certainly look at them when time permits. Thank you again for sharing your story.
+Andrew Jacka Thanks Andrew, have a good one.
Thank you for sharing your story.
You’re very welcome, thank you for taking the time to watch my videos. I very much appreciate it. If you’re interested and have the time there is plenty more videos (over 30). Take care. Neil.
Sir, thank you for posting this great video
I'm sorry your going threw this M.S. night mare,
Just know your not alone....
Since 2014
I started have dizzy spells,
Before this working at a auto store known as
PEPBOYS
we was doing a
"REMODEL" for our store
Anyway
The manager and I
Was carrying this big heavy beam
Long story short
It fell and crushed my right foot
Then I was diagnosed as having
multiple sclerosis...
In 2014
I did a M.S. walk
and was proud of my self
I did the walk with out
Needing to stop or rest.
and now here we are in
2020
I don't hardly leave the house I just stay here.
I can hardly walk
Long distance anymore
Without needing to stop and rest...
God Bless you sir.
Hello there, and thank you for your message and kind words.. I really appreciate them. It's very interesting to hear about how you were diagnosed with MS, after having an accident at work. I was wondering if you'd been having symptoms prior to this accident? Reading on to your last paragraph, I'm so terribly sorry to hear your MS has now got so bad you can hardly leave the house. I do understand, and I know how this feels as well .. prior to my having IV steroid treatment in Nov 2019 I was very much the same. I was diagnosed with MS in 2013, but this last 12 months I've now been re-diagnosed with a condition called "Neuromyelitis Optica" after all my tests kept coming back clear. I've documented this all in recent videos. All the best to you - Neil.
Thank you so much for the fascinating video. Stay strong.
Thank you for your kind words Elsa, I'm so pleased you enjoyed the video and I hope that it helped in some way. If you have time and you're interested you might like to check out many other videos I've done in my MS Vlog playlist, I cover various "real life" MS topics. Take care, regards - Neil.
Stay strong brother! I'm with you on this. I was diagnosed in 2009 after weakness in my left leg. I think it started on a Friday and by Monday I could hardly walk. I went to my GP and she did a couple test. On the last, she told me to walk on my toes. I couldn't as my left foot was too weak. She then wrote me a referral to a neurologist. As she advised, I went to the local hospital. I got a CT scan and MRI that afternoon. The doctor said it looks like multiple sclerosis. They kept me for a week which they also did a spinal tap,
Hey Jeff, thanks for the message and telling me about how your symptoms started. I wasn't diagnosed until 2013, but my symptoms started in 2007. I'm not sure if you've seen any of my recent videos but, my diagnosis is now up in the air because my brain scan, full spine scan AND Spinal Tap have all come back clear!
How are you coping now, do you still have muscle weakness (foot?) or have things improved (hopefully) for you. Cheers - Neil.
@@NeilBradleyMS I remember having double vision in 2008. I thought it was due to dry eyes as I had laser eye surgery in '03. It went away. I remember driving in '04 thinking my vision seemed like a tunnel when driving. The left has gotten better but never 100%. I had double vision later which a little damage remained after cortisone. I had sensory issues in both feet. They felt dumb but also sensitive to cold or even floor at room temperature. Those have gotten better.
I started on Rebif which I developed antibodies making it useless. Then was on Copaxone for several years. It worked pretty good but I developed skin issues. My biggest mistake was going to Tecfidera. It caused Lymphocytopenia. Then tried Aubagio but after 7 years of no relapse, I was hit with one in 2018. I had double vision looking straight and used prism glasses when driving. Thank god that has improved. I haven't needed the glasses for the last couple months. I'm now on Gilenya.
@@NeilBradleyMS Oh BTW I'm an American (yank lol) living in Germany. Although I work as a civilian with US forces, I have private German health insurance. I'm pleased with the German system.
just found your channel...I'm starting from the beginning.
Ok, there’s a lot of videos. Good luck and thank you. I’m 🙏
You are definately an inspiration to me, your story has made me decide to keep nagging at my Doctor to refer me to a neurologist. Thank you. If I remember I'll let you know what he says.
Thank you Fran, are you in the UK? You definitely need to hassle your Dr to refer you to a Neurologist, failing that have you considered just going to A&E (Accident and Emergency) at the hospital, at least you will then have the opportunity to speak to another Dr and hopefully get some treatment. Good luck and please do let me know how you're getting on.
Thank you for this video, well made and easy to understand.
I noticed a few symptoms that I have too with no diagnosis yet. Since 2018 I didn't feel anything particular in my body but once in a while I had a 2 second pause period where I felt I had vibrations in my head because for that 2 second it was stopping...by stopping I could see that the rest of the time it was vibrating (like when you turn the kitchen hood of you realize how loud it was).
Last February I started to feel subtle vibration in my left hand, saw my GP, had a blood magnesium and vitamin B12 analysis, came out normal. I waited to see if it would go away before I saw my GP again,( I don't like to use the health system for no reason), since it was on and off. After 2 1/2 months it got a lot worse, then my 4 limbs were affected. I saw him again, he had booked me for a EMG but the appointment will be in September...had to bare the symptoms. After a whole month I went to see him again to try to get something to relieve the symptoms that were getting worse (which were also tiredness, clumsiness, brain farts, can't get the right words to come out of my mouth to make a decent sentence, burning inside of my hands)and this vibration all over my body even in my chest, abdomen and back...and almost non-stop now. He prescribed me Gabapentin and asked for a neurologist which could take a year before I get to see one. Now I have to wait, if I ever get a lot worse I will go to the hospital and maybe I will be able to see a neurologist faster.
That's my story so far; I suspected either MS or Parkinson disease.
Hello there, thank you for taking the time to write such a detailed message and sharing you symptoms.
I'm terribly sorry to hear that your going through such a tough time, it's so frustrating when you just know there is something wrong, but you can't get a diagnosis. I'm no Doctor so I'm certainly not qualified to diagnose you, but in my experience over the last fifteen years or so, I would say you've definitely got something Neurological going on. So many people have written to me with similar circumstances, all these Neurological symptoms but unable to get a concrete diagnosis. You've just got to keep on pushing the Dr's as much as possible, and if you completely loose faith then perhaps seek a 2nd opinion.
I can very much relate to a lot of the symptoms you mentioned, especially the burning hands.. this still happens to me now. My health is so poor now that I had to give up my job of 30+ years, but when I was at work both of my hands used to hurt so much I'd go the the bathroom simply to hold them under cold water to get some relief. It was only ever short lived though. As for the internal vibration, oh yes! Totally understand where your coming from, it's so hard to explain a symptom nobody can see though isn't it.
I've been prescribed Gabapentin, for me it didn't really help much. The only thing that give me a bit of relief from the pain is Oramorph, liquid morphine. Very strong stuff, I don't like having to take it, but I don't like the pain either. My hand was forced.
It's dreadful you have to wait so long to see a Neurologist, but I think your idea to go the A&E (or is it ER where you live maybe) is a good one. I think this would ensure you would be seen more quickly.
Take care, and thank you one again for sharing your story.
Regards,
Neil.
@@NeilBradleyMS Thank you for this long response to my comment; I appreciate the time you took to write it. As soon as I get worse I will go to ER. Thank you! ;-) Dominique
Your so welcome Dominique, good luck. 👍
Hi bless you I hope you a speedy recovery I also subscribed your channel:)
Thank you very much, appreciate it. 🙏
Thank you for the information, sir
You're very welcome, I hope it was useful.
Excellent presentation Neil, very precise and easily understood......Seems this MS thing takes many years to be able to be identified - I'm with you on the aspect of difficult Neurologists who have an attitude and who so easily prone to brush off your exasperating symptoms as "Nothing for you to worry about"...I have had my fill of them - your MRI experience was a luxury in terms of the one's I have had to endure....nuff said as I don't want to put people off....Mine came back, Negative .I have not been given any diagnosis after 7 years (2009) of exactly the very same symptoms!!!...Both legs/feet/hands/fingers just as you described, I recently had Electrophysiology which determined "Active Denervation". At the moment I can not get a simple explanation either from my GP or the bad tempered hospital Neurologist....Have you had an EMG?.Great stuff Neil, great to learn of others difficult journey to a diagnosis....."Thumbs Up".
Hi there, and thanks for the comment and of course watching my video. Wow, that really is amazing that your having almost exactly the same symptoms but still without any kind of diagnosis after all this time. Not to mention it must also be frustrating and annoying too!
My Neurologist went through my scans with me, I only have lesions on my spinal cord and there is no way I would have spotted them. They were very subtle and certainly needed a trained eye, might be an idea to get a second opinion.
By EMG do you mean the Nerve Conduction Studies, if so then yes.. that was an interesting exam.. I seem to recall there was definite problems on my right side (my right foot/leg is weakest).
I hope you get some answers soon.
Best Regards - Neil.
I'm going through this now. Have just given bloods and starting the journey to a diagnosis, but strongly suspect I might have MS.
For the past few years, I've had chronic body aches. Pain pretty much whenever I move, everywhere. If I walk further than 10-15mtrs, my feet, heels, calved and legs ache. If I pick a kettle up to make a coffee, my arm aches etc. Always thought nothing of it, assumed it was just part of getting old.
Last year, I had spontaneous Optic neuritis, leaving me with partial blindness in my peripheral vision in the my left eye. Again, doctors didn't seem too concerned at the time, said it was idiopathic and gave me steroids. Now, for the past few weeks, I've noted strange sensations in my feet, like a buzzing / vibrating feeling and my right arm is partially numb. Doctors are finally taking me seriously now by the sound of it, after explaining I read that for many people, the first symptom that patients with MS present with, is Optic Neuritis.
Hello there, I’m so very sorry to hear that you’re struggling and suffering with all these horrible symptoms, please know that you are not alone in this 🙏. Yes, I was going to say also that optic neuritis usually is one of the very first symptoms of MS. Also, I can very much relate to the buzzing and vibrating feeling that you are getting in your feet. For me, all the way back in 2007, these were my very first symptoms. It then proceeded to get worse in as much, It felt like I was walking with rocks or stones underneath my feet as well as being very red burning nerve pain and numbness. Even to this very day, in fact, this very moment my feet are hurting as if they are being squeezed. I’m pleased to hear that. Finally, your doctors are taking you seriously, keep pushing them.
thank you for making this vid.. its given me insight into whats also happening to me
+planetjazzy Hey there, I'm really pleased that the video has helped in some way. If you get chance, you may like to check out some of my other videos. They may give you some further insight. Cheers and take care. Neil.
Thanks for sharing your experiences Neil, I hope you're doing well. It sounds like you've had a terrible time of it; I hope things have improved for you since you posted this vid.
I found your vid very informative and the numerous comments from other sufferers really help as well. So I thought I'd add my penny's worth, on the same basis of connecting, learning and supporting. So thanks again Neil.
I've just spent 4 nights in hospital after an initial MRI showed demyelination.
After further scans, including the spinal one and a lumbar puncture...according to the hospital consultants it seems likely I have MS. Appt with Neurology team for formal diagnosis is in 2 weeks time.
My experience started 2 or 3 years ago when I started struggling to walk properly. For no apparent reason, I was suddenly stumbling, losing balance, tripping over nothing, with my upper legs feeling really tired. The GP suggested I exercise, eat healthier and we would catch up in 6 months. Then covid arrived and nothing got followed up by the GP, or by myself to be fair. I just kind of got on with it, almost ignored it, assumed I'd be ok.
In hospital they gave me steroids intravenously and incredibly, on the second day, I found myself running round in my (surprisingly empty) hospital room. I couldn't believe it! I was emotional to say the least, to be running and walking normally again was incredible!
I've since realised this has not 'fixed' my walking issue, but certainly the steroids have improved it, temporarily. My understanding is that the intensive steroids aim is to freeze the demyalination process, stop it in its tracks. Took the last one this morning so I'm eager to see what happens next...
Symptom wise, apart from the walking, it has been relatively manageable so far, but i do worry about what I don't yet know. My biggest issues so far:
Periods of around 4 hours on occasional afternoons (2 or 3 times a week) where I feel utterly drained, no energy, no ability to think, or do anything. I have to sleep when that happens.
Brain fog - organising anything with more than 1 or 2 tasks is taxing.
Noise frustration/anger - being anywhere there are multiple people talking, a TV, radio, birds outside etc. Just overwhelms me.
Word finding - thinking of the word for what I'm trying to explain.
Mistakes - such as writing the word I intend to but spelling it very wrong.
Feet - just, not right. Short periods of numb, or hot, but luckily so far not a problem, as such.
I'll go and watch your other vids.
Hi Craig, and thank you for your message and sharing your experiences. I wish I could say I was doing well, but unfortunately not really. In more recent videos (if you get round to watching them) after having an MS diagnosis since 2013 it's now changed to something more sinister called Neuromyelitis Optica (NMO). It still comes under the umbrella of "Auto-Immune Disease" though.
I want you to know I can completely relate to that feeling of exhilaration when the steroids kick in. As a rule I usually have them by IV (in the vein) as I find it more effective bypassing the GI. The Dr's tell me it doesn't matter whether you have tablets or the IV, but when I had the tablets once, they had no effect.. that's just my personal experience. They always say that the Steroids speed up the recovery process but the outcome will always be the same.
Having said all of the above, I am terribly sorry to hear it's likely you have MS. It can quite often take quite sometime to diagnose MS, I myself was in the 'likely' category for quite some time (over a year). Hey, well done having that LP .. I've only had one and it went quite well (there's a video on it) but I think it takes guts!
You probably know this already by watching the video but for me it all started in my feet (sorry to say) back in 2007. I think it could was brought on by massive stress of a break up.
Hope you enjoy some of the other vids, here if you need to chat.
Best - Neil.
Thank you for sharing.
Thank you Maria, and you're very welcome. I hope you're keeping well.
I'm sorry you have to go through this, I hope you're doing better now. I'm suspected now for it, it's emotionally difficult knowing I'm only 21 and that also my dad has it :( I hope it turns out it isn't it.
Hi Alina, I’m terribly sorry to hear your Dad has MS and that possibly you may have it too. I’m not sure if it is hereditary, it’s something I’ve not researched. However I will say this, there are a lot of other conditions that can mimic the symptoms of MS that are not MS. For example a herniated disc!. Please don’t loose hope, and stay strong 💪 Sending thoughts. 🙏
Fingers crossed for youlove.
I am currently waiting for my appointment on Thursday of this week. Mine started with horrible vertigo. Then I got numbness in my right thumb and hand ( kinda like tingling ), then started in my right foot. My feet are so much worse in the morning and when I walk stairs. I'm 32 years old and this is affecting my everyday life. I hope my Nero is very proactive and we can figure this out. I have a few more symptoms but theses I listed are by far the worst. Thank you for the great video and I'm so glad you found your answer. Best wishes !
Hi Ashley, thank you for your comment and kind words.
I too hope your Neuro figures it all out for you, he/she will more than likely pack you off for an MRI scan.. try not to be too concerned about these scanners as I found it wasn't as bad as I thought it would be.
I can totally relate to your numb feet, I also had painful red/burning hands and my finger tips.. well I can only describe them as a feeling as if somebody had pumped them up.. so painful. Whilst my hands are still effected, its not as bad as when it first started nine years ago, and I've also adapted to it.
I'm glad the video was helpful to you, if you have time you might be able to relate to some of the other symptoms I've talked about in my other videos which are sitting in my MS Vlog playlist.
I hope you get your answers Ashley, I'd be very interested to hear how you get on.
Good Luck!
Kind Regards - Neil.
Definitely sounds like it.. I get a lot of burning and tightness in my feet and legs but I've not had an issue swallowing to date. Hopefully this has subsided for you now.
Hey Agent,
I know exactly what you're saying and totally agree with the complexity of these little 'structures'. The only problem I tend to have (sometimes) is emptying my bladder, I can go.. then literally return a few minutes later and go again! However, you also have to be aware that a lot of the MS medications such as Gabapentin and Pregabalin SLOW everything down in order to reduce nerve pain etc, this can also considerably effect things. I was amazed when I googled people on Pregabalin (Lyrica) and the amount of people suffering from incontinence because of the drug, not the underlying health issue.
How is your swallowing now? hopefully its improved for you and returned to normal.
Regards - Neil.
Hi, excellent video. When can we expect part 2? I'm curious what they found on your MRI. I'm having some issues myself and my brain MRI's revealed numerous small lesions. Each report says, "not consistent of MS lesions".
+bailsb Hey bailsb, and thanks! Yep, I plan on making part 2 at some point in the next few weeks, I guess I wanted to make sure I got a few views first. The plan is to make a Video Log series of everything that happened leading up to my diagnosis, and after leading up to present day.
What sort of symptoms are you having?
MS is difficult to diagnose, it took just over a year to get my diagnosis and that was after presenting with repeated new symptoms, walking as if I'm drunk, numbness, extreme skin sensitivity to name a few. But also Uhthoff's phenomenon which I'm also going to be talking about in an up coming video.
Regards,
Neil.
+Neil Bradley Hi Neil, not sure there is a way to send a private message? Anyhow, I've had symptoms for the last 10 months. Currently it's twitching in my legs and leg pain which is worsened by how much activity I do throughout the day.
Hi - Fairly sure you can't private message on UA-cam, but you can email me at neil.bradley@hotmail.com
The neurologist hasn't even seen me yet. She has her long time nurse do the neurological exam and then sends for an MRI. She wrote me off immediately because I "passed" the exam tho I still got the MRI. Meantime my symptoms have continued on. The MRI showed white "spots" in several locations and the nurse said they must be the cause of the headaches. So, I won't even SEE the neuro for a another month and I just need help. Daily pain is no joke and at this point the drs just seem content to play pass the patient rather than helping me...
Hi There, I'm so terribly sorry you're going through this nightmare. From what you say, it does seem you're being fobbed off and what the nurse said is incredible. You're absolutely right about the pain, it's 24/7 for me. I sit on the edge of my bed in the morning, just not knowing which way to turn as I ponder on trying to move and get dressed. It's just so tiring and soul destroying. The only thing to do is to keep hassling them until you get some answers. Take care.
I went to my doctors last week with those symptoms and a lot more. I was given the appointment with the junior doctor and sent away with an anxiety diagnosis.
I hear this so often, in fact only the other day by a different subscriber. It seems so often when the Dr's have come to a full stop, they default to 'Anxiety'. Of course people with horrible neurological symptoms are going to be anxious, because what they're experiencing is SCARY! But anxiety is not the cause as I'm sure you'll agree. Take care.
Thank you for replying. I even went to a chiropractor who said that I had dysdiadochokinesia. But the doctor said it was something that people who have parkinsons disease. She did a test with some cotton wool and a pin test. But I did say it was an altered sensation in my foot and a couple of other places. I am being nagged not to leave it as got up the courage to go and felt really stupid. I might just be a hyperchondriac 😁. I am going to watch a couple more of your videos. But I don't want to talk myself into something that isn't there although the symptoms are very real. She also said my gait was fine when I walked in and the strength in my legs are OK. I found your videos easy to follow at 4am this morning when I couldn't sleep again and felt like I was being zapped with a fly killer machine.
You're welcome, and by the way I don't think you're a Hypochondriac! Last night, I too was being zapped by the fly killer machine ;-) It gets my left leg, which KICKS OUT violently and uncontrollably. This only happens at night as well, usually when I'm very lethargic or asleep. Best thing to do with your symptoms is be very objective, what I mean by this is write them down, when they started, any new symptoms etc. Very importantly, date and time them.. basically as much information as possible. History is very important to Dr's when trying to diagnose a person. I hope you're feeling a little bit better today.
I have multiple sclerosis since 2003 its rough. Now I'm dealing with ringing in both ears all week..blood pressure issues high pulse rates when walking
Hi Michael, so sorry to hear not only are you having to deal with MS but also Tinnitus! I know how debilitating Tinnitus is, a long time I suffered with it terribly and my anxiety was through the roof. Not being able to turn a noise off inside your head is actually torture. I do understand. I do know that medication side effects can be a culprit for turning up ringing in the ears, but it could also be your blood pressure so you probably need to get that checked out. My pulse rate also increases significantly just moving from room to room, but I put this down to the fact it takes so much effort and considerably more strength and ENERGY to move about now.
Thank you so much for this video, your symptoms so far sound familiar to how mine started, although I have electric shocks in ankles and knees as well, and horrendous itching, that's been coming and going for 20 or so years, but because it came and went, I thought I was nuts, or it was medication I was taking for chronic pain. Or just something weird, but it went away, so know worries. Then a couple of years ago after I stopped taking all medications, suddenly these weird symptoms stepped up a notch, I started getting bad double vision, and patches of skin that would just burn, like a hot water burn, I couldn't bare have clothes touching them, fatigue, brain fog, and falling a lot, trouble walking. I started googling and thought I had MS, 3 months ago I had a bad bout again, and bit the bullet and went to the doctor, and am booked into see the neurologist in a couple of months... these bouts happen about twice a year, and I'm fairly certain its MS. It will be good to know for sure, although I refuse to go down the medication route, taking medication all year, for something that happens for a month or so twice a year. ...
Whoops sorry I went on...
Hey Karen :) Thanks for watching, and I really appreciate you commenting. Quite a few people have mentioned the itching you speak about, although I've not experienced this myself. I do get something close though, which is extreme tightness to varying degrees in both my legs, feels almost like I'm wearing plaster casts or tight stockings 24/7.
I can TOTALLY relate to the burning skin, I used to have to keep cooling my hands and feet under cold water as and when I could. Clothes as well yes!! They have to be loose fitting, but also when these symptoms first presented themselves for me was 2007 and I couldn't stand the bed sheets on my legs, it was absolutely horrendous! (this still effect me now but not so bad) So I know where you're coming from there.
You've certainly described a lot of the classic MS Symptoms, and you've done the right thing by making an appointment with your Dr as there are some similar conditions to MS which would need to be ruled out/diagnosed etc. Also, its interesting to note that your symptoms calm down and then re-occur, another classic sign I'm afriad.
My advice would be to jott down on a piece of paper bullet points, listing the most significant symptoms and how they effect you. Don't rely on remembering when you get to see the Neuro, if you're anything like me your mind might go blank. It's really important that you tell them everything, also date and time things because a timeline of when symptoms first started to happen is also VERY important to help with diagnosis.
I also don't like taking medication and have been slowly weening myself off.. I was taking Copaxone, this is a drug which helps prevent relapses.. but I took myself off it. I've done a video on this which you might be interested in watching. If you get time, have a look at my MS Vlog Playlist where you'll find several more videos I've done recently. Here is the link:
ua-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
I hope all goes well with the Neuro visit, I'd love to know how you get on.
Kind Regards - Neil.
Yeah, I am going through the various vids, I'm upto MS Vlog #6 - MS An Easy Explanation, so far, I'm had everything you've had and more... so its more than likely, its MS or Parkinson's... :(
That thing with you're knee bending backwards.... thats horrible isn't it.... I have another thing that happens periodically, I wonder if that could be related... when I wake in the morning, after sleeping on my side, one knee will be locked, and movement ... well you can't move it because the pain is so bad... then a couple of minutes later, the pain will vanish... I thought it was related to a food I ate sometimes. So many things I want to ask you... I'll get back to watching your vid... :)
No please go on.This is incredibly informative thanks
Thank you so much!
You’re so welcome.
Thank you for making this video. Hope you are doing ok. It IS helpful for us viewers. I have burning sensations in my feet on and off the last month, now followed by the leg, tops of my hands, my wrists, and weirdly (it all feels weird, really), an eyelid and the outside of my ear. I have a neurology appointment in a few weeks, I'm not sure it is MS but my GP wants to investigate.
Hi there, and thank you for the message. I’m so pleased you found the video helpful, this was in fact three years ago now.. a lot has happened since then. Just so you know, I am all too familiar with the burning sensations. It’s all nerve related. Good luck with your Neuro appointment, I wish you well. Perhaps you’ll come back and let me know how you get on.
This is exactly what my husband has been going through for 13 years. Im taking him to have an MRI first thing tomorrow.
Really!! I’m terribly sorry to hear this and so glad that you’re there for him. I’d be very interested to hear back from you to see how he gets on. Please give him my best and wish him luck. If he’s at all worried about the MRI, I’ve also got videos on the procedure. It’s not actually as bad as it sounds (the tunnel scanner!). Best - Neil.
@@NeilBradleyMS Hello! I got the results of my husbands MRI...
Small focal area of T2 signal demonstrated in the white matter and small area of chronic microvascular ischemic demonstrated in the right pariventricular area adjacent to the trigone.
Is this MS ??? I know u are not a Doctor and I am just asking for your opinion because it will be weeks before we can see a neurologist 😞
Hello again, to be completely honest with you I really don’t know. Best bet is to try Google and research what the different terms mean. But even then it will need a Neurologist to properly put it all into context. Sorry I couldn’t be more helpful. I know how frustrating it is having to wait for answers. Hang in there.
Hi did you get a diagnosis?
Yes sounds very similar to my experience over the last 6 months although I’ve had a lot more symptoms xx
Which symptoms my friend
Thank you for all your vlogs. I saw my GP yesterday morning before watching your vlogs. I said I feel like I have a constant electrical current buzzing in my left leg. I am more affected on my left side. I have the eye problem double vision etc. I know that MS is in the family and asked my GP if this can now be investigated. I am so frustrated with forgetting simple words and loosing my train of thought. I have taken all your advice on board and will put pen to paper tomorrow with a timeline is events including an op 10 years ago for carpel tunnel all my left hand lost sensation. many thanks for all you mentioned x
Hey Jo, thank you for comment and also for your subscription.
That's a fair few symptoms you've got there if I may say so, I hope your managing ok and they're not getting you down too much. I noted that you've got MS in your family although I'm not sure if this is a hereditary condition or not... Actually I've just Googled that as I was interested, apparently it is not hereditary however if you have a first-degree relative (such a parent) with the condition, there is a greater chance you may get it. Hopefully your GP has referred you to a hospital for tests etc, which should get the investigation underway. For me, I'd kind of already worked it all out.. but needed the Dr's to come to the same conclusion. I'm entering Secondary Progress phase now of MS - ho hum such is life.
I'm so please you've taken my advice and are keeping a Diary, excellent!!. This will prove time and time again invaluable.. in a way I'm doing this now in the form of video with my MS Vlog.
If you don't mind Jo, please pop back at some point soon and let me know how you're getting on with the hospital. Be warned though, it took over a year to get my MS diagnosis because its difficult to diagnose as there is no single test (it a collection of tests/symptoms over a period of time). Obviously nobody wants an MS diagnosis, I'm just trying to gently let you know you could be in for a wait whilst they asses you.
Take care now, and all the best.
Neil. x
Very interesting. I am going through some similar issues and waiting for my MRI appointments. Do you mind if I ask how old you were at the time of diagnosis? Sorry if I missed this.
Everything Gwenny Hi there, not at all. I was diagnosed in May 2013 at the age 40. But I started to have symptoms in 2007 (age 35).
Thanks for this. I am 41, almost 42, and was told most people are diagnosed younger than 40 so I was curious.
Hi Gwen, yes that’s my understanding too however from the research I’ve done, that relates to the most common form of MS which is relapsing remitting (RRMS). Even though I was diagnosed with that to start with, I’ve never thought I properly fit the criteria. I would never get new symptoms, my existing symptoms would just continue to gets worse and worse, more progressive and I would never ‘remit’ as the description suggests. I continually told my Neuro this and finally they changed my diagnosis to Secondary Progressive (SPMS) but honestly, my criteria I’ve always felt fits the category of Primary Progressive (PPMS). If you go on to the MS Society web site, it describes on there in great detail the different forms of MS.
Thank you. I just went to their site. What an interesting read. I am honestly hoping I don't have MS, but I know it's one thing they are investigating. I am suffering with weird andominal pain that has been ongoing for over a month, and they started asking me about my headaches and blurry vision and weird tingling in my hands as well that I never even thought of being related, hence the request for MRI scans. now it's all just about the waiting.
Electric sensations in bottom of my right foot, ms hug feels like my chest and ribs are crushing me, and blue 🔵 in right eye vision. God bless us all
Hello Paul, I'm sorry to hear you're suffering with these horrible symptoms. Have you been diagnosed?
@@NeilBradleyMS hello, no not yet I thought it was my afib which I was diagnosed with last year, then I stumbled on the ms hug and realised that was possibly what I was experiencing so I need some tests done.
Hi, thankyou for sharing your story. I wanted to ask you something becauae I have been experiencing symptoms as well since 2 years. It all started with leg twitching, but over the years i have started getting buzzing and humming in my feet and hands as well. 2 years ago when this started i got an MRI of the brain and spine and it was normal. Recently i also got an EMG. The doctors have all said there is nothing wrong after doing blood tests as well, however these feelings remain.
Do you think that i should still be worried for MS? Since neurologists have said i shouldnt. I dont know of anyone in my family who has had MS
Hi there, and thanks for your comment. It does sound like you've got something neurological going on judging by the description of your symptoms. I would say, if your symptoms are persisting then push your Doctor further for an MRI of the Brain and FULL spinal cord, with contrast. If they're not willing to do this for you, then perhaps seek a second opinion.
Do you, by any chance, have either hsv1 or hsv2 as they have been know to be a possible cause due to the damage it does to the nerves.
Hi Jay, I didn’t know what HSV1 and 2 was, I had to Google. No, I do not ha e those, thanks for the comment.
Thank you for sharing. Last year, my start was similar to yours in that I was filled with a ton of stress. I got let go from where I worked on the week of xmas. Then I accepted a new job but that weekend before I was suppose to show up I was struck with diplopia. Well that turned out to be MS after a spinal tap and MRI. Sort of strange for all that to start because I was happy and my body gave me no signal of anything.
Hey man, i've been feeling for a year numbness, tingling and random pains all over my body, butt,face,legs,back,belly,arms,hands, feet..but my all exams including the mri are clear and inconclusive. If its not ms and also nothing else show up on other exams what should i do now? I'll still try to get other opinions later on, but till then I have to do my normal life and its affecting it a lot I feel like it just keeps spreading around and getting worst over all this time and keep going. I also have been doing accupuncture and taking a lot of antidepressants but still nothing. Hope you're doing good.
I would appreciate any advice, greets!
Hi Andre, I’m sorry to hear you’re suffering with all these horrible symptoms. So many people write similar messages, saying the same as you that all tests come back clear. It’s so difficult, to know what to do next isn’t it. A lot of people feel they have no choice but to seek a second opinion, often a second more experience set of eyes see things other Dr’s do not.
After being diagnosed with MS since 2013, I’ve now been re-diagnosed yet again recently having had all my own tests come back negative this last twelve months. It’s a tough one, keep pushing. More recent videos document my journey with my new diagnosis. Best to you.
Thanks a lot tho! I'll keep a touch on it! Best to you too.
Do widal test(Typhoide test) if it comes positive n doing treatment releted to typhoide your all problems will vanish.
@Renato Sanches how r you now
Did you ever have what Id call extreme severe buzzing circling around individual fingers? This happens in other areas as well when it's present. Up legs ... But I'm specifically asking about fingers. This happened to me and I KNEW wherever i was experiencing this severe buzzing, pain circling around fingers? Thank you. I so appreciate your videos!!! Finding listening to patients describing in depth their symptoms and experiences is more helpful than anything. The symptoms with MS and other I guess demyelinating diseases are absolutely scary and BIZZARE! My lumbar puncture/spinal tap according to neurologist shows nothing but the blood tests indicative of inflammation and autoimmune showed something. So far I'm symptomatic with one lesson on brain MRI. I'd bet my life my spine up and down has lessons. God bless friend.
Hello Jacqueline, thank you for your message. In answer to your question, I'm not so sure I get the buzzing circling sensation in my fingers but what I do get is numbness in my finger tips. But also, I've also described this sensation as if my finger tips have been "pumped up" and they're actually quite painful. It's all nerve related pain giving off weird sensations.
my feet burned for a while and i started on cilantro/chlorella detox , nascent iodine , lots of vitamins and oregano oil. The feet burning has never returned. Tick bites will cause numbness in fingers and burning and wrist pain that drs will think is carpal tunnel. Many people could have tick disease and not know it .
Borrellia Burgdorfii a.ka. "Lyme Disease" named for Old Lyme, Maine (Spelling on all of this?)
Hi Neil thank you so much for sharing. I have similar symptoms for example left side face, hand and foot numbness. Started about 8 weeks ago, visiting neurologist in under 2 weeks and I’m sure I’ll have a MRI scan. I think I have ms but will wait for the scans to confirm.
Neil, have you researched stem cell therapy?
Hi Sameer, it's good to hear from you and thank you for commenting. I'm so very sorry to hear that you're having to deal with these horrible symptoms, know that you're not alone in this. You've taken a good positive step by going to your Nuerologist, in the meantime may I make a suggestion. If you haven't already done so, write down your symptoms and when they started. Make a note of any changes and when .. also just keep the journal going for any new symptoms, or if symptoms disappear etc. With any Neurological condition, symptom history plays a very big role, along with other tests such as the MRI Scan (as you said). Not wanting to worry you but they may also want to do a Lumbar Puncture (AKA Spinal Tap) .. I was very worried about this procedure, but it turned out to be perfectly ok and not painful at all for me. I have a video on it on my channel if you're interested, I had it done in 2019.
I really appreciate how worrying this time must be for you, but it's important to just take one day at a time. Take care my friend, and if you need to chat .. I always respond to comments.
All the best - Neil.
Yes I have, but quite a few years ago now.. personally I'm not a fan. They have to effectively 're-boot' your immune system. The procedure as I understand it is they have to kill off your immune system first by giving you aggressive Chemo. Once this has been done, they transplant the stem cells.. then the theory is your immune system slowly but surely regenerates but without the desire to attack myelin. However, if you research this procedure.. what they don't seem to tell you is the chemo is so aggressive it can in fact cause more problems than you've already got, and sometimes it can actually be fatal! Also, I think I could be right in say an existing damage is irreversible. Having said all of that, from what I've read about people having had it.. it has been successful in reversing their condition which is pretty amazing.
@@NeilBradleyMS hi Neil hope you’re well. I went for a brain and full spine Mri and results came back positive with no legions. I asked for a spinal tap however the neurologist said given my symptoms were in three different places i.e. face, hand and foot it’s highly unlikely for legions not to show up either on the brain or full spine Mri. I’m relieved and awaiting blood results. Do you think a spinal tap is necessary given the above? Thank you 🙏🏼
I’m really pleased to hear no lesions on the scan, that’s really good news. As for your question, hmm that’s a good one. I have to be honest, I’m not really sure about that. Something has to be causing your symptoms, yet nothing is showing up on scans. I was actually diagnosed with MS in 2013 without a Spinal Tap, and based on the MRI scan results alone. It was only in 2019, they did a Spinal Tap because they were becoming suspicious that I may have a different condition. I do actually have NMO (Neuromyelitis optica). I suppose you have to take it one step at a time and see how you feel about their investigations and results.
Thank you very much for posting this up, I really appreciated your time in explaining your symptoms. I am awaiting the results from a brain and spinal MRI. I have currently got extremely symptoms regarding my feet and electrical shock sensations in my spine. I wish you all the best for the future.
Matthew Ashby Thank you Matthew. I'm sorry to hear you're having a worrying time at the moment, I can totally appreciate how scary these sensations can be. As you know by the video, for me it all started in my feet so I do know how horrible it is. Good luck with getting yourself checked out. I'd be very interested in hearing how you get on.
I have a playlist with many more videos which you may find interesting. You may be able to relate to some of the other topics I talk about. In the meantime take it easy my friend. Best regards - Neil.
I'm going through a lot of the same stuff but I'm not diagnosed yet.
Hey Elena, I’m really sorry to hear this, it’s not easy. Depending on your symptoms, it’s not always something sinister. For example it’s possible for a disc bulge in your back to mimic MS symptoms in the lower body. So hang in there! Always here if you need to chat.
I had the same symptoms in 2014 and 2016. My MRI showed tiny lesions so the doctor said that he want to make me a spinal tap. I'm still waiting for a diagnose but I think I probably have MS....Sorry for my English, I'm spanish
+minikira13 Hey Minikira, your English is absolutely perfect! I only have lesions on my Spinal Cord and they were also very tiny to see. In fact it was the trained eye of the Neurologist which spotted them.
I'm sorry that it's looking like you may have MS, it's not the news anybody wants to hear. I'm not sure if you realise but I have many more videos which may help you. Check out my playlist, "My Life with MS", they are in sequential date order starting st no. 1.
If you don't mind my asking, what are your symptoms currently?
Regards - Neil.
Your English is good. God bless.
Did you have a mri on your neck i get my results tomorrow im scared
Hi Sara, and thank you for your message. I can totally understand you being scared of getting your results. I've been there!, and on more than one occasion. Lets hope the news is good, and the symptoms you must be experiencing is not being caused by anything sinister. In answer to your question, I've had about 11 MRI's too count since 2007, a lot of those were full body which includes Brain and full spinal (including neck). I wish you well, feel free to pop back if you need to chat.
Hi Neil, I feel im talking to you on every vid youve made lol so weird I feel like weve gone through same things ive always had weird probs swallowing, foot pain as a kid my mum said it was growing pains, it wasnt anyway was in a car crash about 22 yrs ago went numb down one side then couldnt walk without holding onto someone, it lasted a year also had eye probs turning my head made me really dizzy I went to the optician who said I had a twisted cornea in my right eye, ( playing super Mario) we both thought, was told the tremor and electric shock pains was because I had tissue damage in my neck and id jolted a disc in my back, year went past and everything gradually went back to normal although still had swallowing probs and afew other things but I thought that was just normal for me, I was OK for 15 yrs! then I decided to break off my engagement to my partner of 12 yrs that affected my daughter it was very upsetting and stressful but I felt I had to do it as I just didnt feel happy I didnt know all the feelings and pain I was going through was Ms anyway all turned out OK eventually, we are still friends I even went to his wedding, Dave who im with now, I went to school with him he was my 1st crush we didnt move in the same circles and lost touch when we left school and then when I was about 31 met on a chat site online (cheesy) after I think nearly a year I met him for real, I wouldn't meet him before cos I couldnt walk which I thought was the car crash but my consultant now says it was Ms anyway met him, was friends first as I wasnt looking for a b/f at the time and then we got together after about a year, everything was great but over the years my daughter got pregnant the father was a washout idiot then Dave was made redundant 4 times over the years the last time was just before we bought the house it was so stressful I thought we would lose the house anyway we got through it all and then he was made redundant again, we had no help as in benefits we had to survive on my wage for a year and we ran up some debts obviously cos we just couldnt survive on the one wage, I was worried about him cos he was worrying about getting a job, id go to work at 7, do a 9 hour shift go to the shops after work get home about 7.30 made tea did some tidying up id get a shower and then it was after ten at night that id actually sit down, I got run down, I caught ear infections stomach bugs, eye infections, vomiting bugs, ive always had a low immune system and im alergic to antibiotics plus grass dust metal and Cats (horror) I also cant have adrenaline so I have to have a special needle at the dentist thats not as good as the proper one, 2 years ago I had a tooth out and it took 2 and 1/2 hrs to pull and 25 injections as they found out half way through that I had twisted roots it was horrific, during that I was having leg spasms and tremor and I also suffer really badly with dry mouth, I was covered in blood they had to add water into my mouth so they could use suction, I was told I had gum disease and since then my teeth have started moving and one time I was eating polo mints, (I find this funny myself) , I have to crunch them so im crunching away thinking wow these are really hard to I bit down hard and a pain shot right through my head, ( I was crunching my own teeth) 👄I did damage to my other teeth so had to get them fixed, 2 wks ago another 2 teeth just snapped so im gonna have to go again when this happens my Ms is terrible I find that I tip over to the left when I try to walk or I slurr my words and my memory is terrible, I can be looking at the fridge but cant remember the name of it or even get a word out and when im tired my voice goes, lately im having unbelievable tiredness thats very overwhelming, I feel guilty if I sleep in the day but I cant sleep at night because of these really bad twisting pains in my ankles and then I feel crap when people say oh all you do is sleep! except I dont sleep any more than them cos im awake when they sleep sometimes 2 days in a row, its horrible I hate it especially when it effects my speech I get really angry with myself for letting it happen, the medication im on is alot plus rebif injections and I feel no better so I dread to think what id be like without them plus I forget to take them, when I feel really down Dave tries to make me laugh, it usually works, he does the cooking now as im a danger in the kitchen he does so much for me I feel like hes now my carer which I hate, hes so lovely even bladder probs I have now and then dont phase him I love him more than he knows, I dont think I say that enough to him sometimes, I try to fight my Ms cos in alot of ways its ruined my life but in other ways its made me look at people differently, I now see the people I dont wanna speak to anymore cos they just cause me stress its made me a better person but also antisocial I hate the wheelchair hate the walking sticks and crutchs hate my special kitchen chair and bath seat and step, didnt think id have all these things till I was in my 80s, I cant plan things cos I dunno how I'll be on that day and I pray one day it'll be gone when I wakeup but I think thats never gonna happen, its great to see people who have Ms doing well, I love that it cheers me up that they are pain free for a while, anyway just realised ive written a book here, I told you I go on lol take care luv Sue,,,,,5 cats ( who im alergic to) ha.
Hello Sue, 5 cats (who you could possibly be allergic to) ..
Well thank you for your comment, as always I really enjoy reading what you have to tell me.. I really do.
So, you're back on my first video then Sue? It's been a long learning curve putting these videos together, but I've enjoyed doing it. This first video, which just happens to be getting a lot of views, I recorded in one fell swoop. Where as in more recent ones I've edited them, bit of background music and tried to give them a more professional feel.
The car crash sounds horrendous, and I'm not surprised its taken so long for you to recover. When I was first reading about this accident, I wondered if this could have been a trigger for your MS.
The teeth pulling, ewwwww.. the less said about that the better I think Sue, don't like Dentists at the best of times lol (feel all giddy now).
I don't sleep either Sue, take last night for example I was up three times in the night. To be honest, I've tried to accept that I'm no longer ever going to get a sound night's sleep and if I do, its a blessing. I snooze during the day if I'm tired. But yes, its so insulting people telling you that you're always sleeping.. when they simply don't know what's happening in your life, or perhaps don't want to know. It's ok for them, they're "normal" and don't have MS pain and are able to get a sound night's sleep. Where as people like us, that is but a distant memory isn't it.
So pleased for you Sue, Dave sounds like a real Rock that you can rely on and nothing is too much for him. This is so much like my Teresa, we're very lucky people to have amazing life partners in our lives.
I have reached the stage now also Sue that trying to plan things to do like Social Events etc is becoming so difficult and a struggle, because like you, I never know how I'm going to be on the day! And yes, as a result I'm feeling very anti-social also. Teresa never ever makes me feel bad about this, but I say I don't want her missing out on things because of me. She just replies in her calming voice "I don't mind, I just want to be with you" bless her. She's an Angel.
Sue, I'm pretty good at writing "book" replied also.. but on this occasion I think you've beaten me to it.
Until next time, take care.
Neil.
Oh wow, I m now being tested for MS, although I have always assumed my feet especially my right foot the feeling of walking on air although not much pain; I developed cramp in my calve muscle .... This led to a diagnosis of Peripheral Vascular Disease, this was in 2006. My feet also were extremely hot and bright red as were/are my palms. I was told to stop smoking and was put on statins and aspirin, I was basically discharged and was told not to worry and carry on and walk through the pain. Well I was 38 at the time and thought hmmm well I’m on meds been told not to worry, so I carried on smoking..... I actually remember each time walking to the shop to buy ciggies, and a few groceries, I was in so much pain, I’d have to stop walking and should I have had a carton on cold milk, I’d rest it on my leg lol. One particular day this happened and I thought, I am literally killing myself each time I buy ciggies’, of course I’d get home the pain would go, my right foot would go from every colour of the rainbow back to normal, and my pure pig headiness I carried on smoking. FF to 2013, I had recently lost my wonderful Dad, yet a real pick me up was to discover I was going to be a Nanny! for the time, a very yearned for new baby which I may had wasn’t easy to for my daughter to create.... So Oct 2013, my Granddaughter Belle was born, a few weeks later I was asked to to watch her for an hour whilst my Daughter and her partner had a little time out. It was a Saturday, I’m sitting at my kitchen table, rocking Belle in her pram, and said to my husband, ‘hmmmm my arm feels weird’ his response was to stop pushing the pram lol. Well a couple of hours past, Belle and family had gone home, and I had awful indigestion, obviously, my Dr Surgery was closed being a Saturday, so I thought I’d give 111 a call to see if the could maybe get an out of hours appt. I mentioned my arm as they go through the lists of everything lol, and really trying to cut this shorter, paramedics came, did ECG, all good, all obs were great but they said they’d take me in hospital to have some blood tests to rule out anything sinister...... after an hour of a Dr, came over and told me I’d had a severe MI, ok he had to put in English it meant a heart attack, and I was wide eyed in disbelief. I say severe as the following day I had an angioplasty, and a stent inserted to a 97% blockage.... well things have been ok in that department, just felt I’d been dealt a few rotten life cards.... Then about 2015 I was having body aches, sooooooo very tired, just felt awful ( have another Granddaughter now Beau lol ) I’m quite an upbeat person but got to me that I couldn’t do a lot of things I thought I would have with my new little reasons for living 😍😍.... Anyways i was told I had Fibromyalgia, and to this day I don’t fully understand what it is, I just had yet another label :/ ... My next blow, was Oct 2017, I had T2 diabetes, aggggg oh yeah I for to mention I quit smoking g the day of my heart attack 🤩, but after this diagnosis I was so upset, that I could eat chocolate anymore... Also forgot that although I’m upbeat, I suffer with depression too ..... but we must carry on !!!
Now this is the part that maybe connected to your story. All the ails I’ve mentioned , the hot burning feet and hands, like crab bites on my inner thighs, my right shoulder and arm is absolutely killing me, my left elbow feels so hot I think it glows ! My vision has deteriorated but that could be the diabetes, yet the list goes on, my attention span is that of a goldfish, my right foot turns in and somewhat drags now. Hip pain, constant bloody headaches, feels like my head has swollen and puffy ( isn’t though lol ) and I’ve had a blocked like feeling in my left ear for about 3 years I feel dizzy when I stand... I’m on so many meds now I rattle. And although I don’t want to have MS or anything similar, I hope that whatever it is, I can have some form of treatment for this stupid aggravating pain!!!!
I guess the early symptoms I had similar to yours, I have down to the ailments I have already... oh well onwards and upwards. My neurologist appt isn’t until 19th June, but if you’d like a much shorter report on any findings, I can jot them down .... may take a while to get results though lol
I hope this book I wrote finds you well.
Oh I have Grandson also now William his 5 months old . I must say my grandchildren were just like waiting for a bus and 3 cams along near enough at the same time
👧🏼👧🏼💂🏻♂️
Hi Michelle,
Thank you for writing such a detailed message, both my wife and I really enjoyed reading it.
I can relate to a lot of the things you said, especially the burning and bright red hands and feet, and yes the walking on air too. I always describe it as the ground moving underneath my feet (even when standing still).
Wow you were very lucky indeed with regard to the heart attack. Packing in smoking is a very wise choice, especially as you can now enjoy your lovely grandchildren, and I’m sure they want their Grandma to be around for some considerable time yet.👍 I’m sorry to hear you’re now also having to deal with Fibromyalgia and Diabetes. It’s hard not to feel life has dealt you a bad hand isn’t it. Teresa my wife has diabetes and she (we) manage it very well just by eating sensibly. Yes you have cut a lot of the sweet stuff out but, remember it’s important to have a treat once in a while. Diabetes, if not managed well can be evil, you already say your vision isn’t good. Make sure you get regular retina screening. I know people who have lost fingers through poor control of their sugars, please be careful.
You have a fair old list of symptoms their Michelle, I can relate to the burning and the dragging of feet etc. For me however my MS is purely in the spinal cord and so symptoms are all lower half of the body, nothing visual/hearing/headache etc.
It’s great you have some lovely long waited grandchildren to keep you sane amongst all of your horrible symptoms. Good luck with your appt in June, and any time you feel like writing another ‘book’ please just drop by. It will be lovely to hear from you.
Take care.
Hi, thank yous to you and your wife for taking to the time to read my book lol and more still for replying 😊
Sometimes I do ramble on, but it’s good to be able to vent, especially when someone is kind enough to listen.
Take care, and I’ll let you both know of any outcomes
Thank you again 🙂
Thanks Michelle, well you can feel free to ramble on to us anytime😉 We are here to listen as and when you feel the need. We constantly monitor the channel for comments, and reply to absolutely everybody, time consuming as it is.. but it’s because we take the channel very seriously along with all the subscribers such as yourself. I hope you have a lovely weekend.
Very interesting that your symptoms surfaced following both of your moves. Same thing happened to me when I moved into an apartment following a divorce, which I believe was due to pesticide poisoning for bed bugs.
+Robert Dixon Hey Robert, yes I think the moves could be quite significant. They say moving house is one of the most stressful things in life we have to deal with. However with myself, my symptoms started with my separation. I found it very traumatic no longer being able to live with my children, I found myself in a very dark place - I believe this was instrumental in triggering my condition. Interesting you mention about the pesticides, this could well have have made you ill. I'm sure after treatment for bed bugs it should have been left for several weeks uninhabited. What kind of symptoms are you experiencing Robert?
Same here. I went into a year-long depression following my divorce and subsequent move to my apartment. I hope you stay strong and positive.
+Robert Dixon Thanks Robert, you too. All the best.
Thank You
Hey Zak, you're very welcome😊
What a great video. Thank you. I am currently waiting for my brain mri appt after I've started feeling like ants are biting me all over, plus 10 other symptoms. My arm, hands, legs, and feet have been steadily getting more numb over the last year, after a back injury. But now, it may not be my back like the doctors and I thought. Did you feel like you had ants biting you all over? That progressed fairly quickly? Seems to happen more so once I "lose" my right arm.
Hi Nikki, and thank you.. I’m pleased you enjoyed the video. This in fact was my very first back in 2016, since then I’ve done over a hundred!
I do know of the insect crawling feeling and there is a name for it which escapes me now. I’ve never experienced it but it definitely neurological.
I’m sorry to hear you’ve been experiencing all sort of horrible numbness feelings, and I can see how a back injury may muddy the waters so to speak. Back in 2013 with me they thought it was a disc causing my issues. They corrected the disc but the problems didn’t go away. I got an MS diagnosis in 2013, but I’m now in the process of being re diagnosed yet again. I’ve documented this in my latest videos.
Have you experienced any muscle weakness? Or is it just sensory.
Great to hear from you.
@@NeilBradleyMS hey, thanks for responding! Looks like I have some work to do to watch your other videos. So I herniated a disc in may 2018. Still hurts. But also found a tarlov cyst on s2 nerve root and I have an extra vertebra. I'm a medical marvel! Since then my life has changed drastically. My entire right leg goes numb at times. Along with foot. Same with right arm and hand. It seems that when this happens I also become "drunk", cant talk right, think right, and lose balance. I trip over nothing, all the time. The "ants" started a week ago. I'm constantly drained and worn out. I've had to quit working due to the pain I stay in. Cant take epidural shots because of cyst. I also have terrible migraines and see black floaties sometimes and bubbles. I've thought maybe I've had some small strokes, but I'm only 34. So, now, to check for MS is what's next. I feel like that's what they will find. And of course there is still a list of symptoms that I experience.
So, short answer, yes, muscle weakness and I miserably failed the paper clip poking test on right leg, as there is minimal feeling left in it
nikki watson Hey Nikki, thanks for coming back to me. Sounds like you’re definitely not in a good place at the moment. Wow an extra Vertebra, that’s a new one on me. Just something to look out for, see if temperature effects your symptoms. This could be something called Uhthoff’s Phenomenon. Happens to me all the time. Hope you get some answers soon.
@@NeilBradleyMS going outside seems to bring on the "ant stinging". I'm in Texas, so it's nice and hot!
I went to ER yesterday cuz the drunk feeling got so bad and they asked me if was on methamphetamine!!!! (Cuz I said ant stinging sensation) Lol...my drug test clearly stated no lol.
exactly same numbness in feets and hands burning and pain and gain and walking problem waiting for Mri results getting worse and now up both legs to tights and arms ....
Hi there Annie, thanks for reaching out. I'm so terribly sorry you're experiencing these frightening and worrisome symptoms. Knowing that you're not alone will hopefully help you feel a little better. There are lots of us including myself that know EXACTLY how you are feeling. I recommend you keep a journal of symptoms, both past and present, as much detail as possible, date & Time is very important. When a Doctor is trying to make their diagnosis it will help massively being able to look back in time and tell them when it all started. Here if you need to talk. All the best - Neil.
Wow Neil I’m nervous now. My symptoms started over 3 weeks ago. Pain, tingling and numbness in my left leg from behind my knee down to the top of my left foot. Also extreme dizziness and ears ringing. P.C. doctor thought vertigo. I have been to ENT last week and am scheduled for a balance test in a month. Last several days now my left arm is doing the same burning and tingling under my armpit down to my fingers.
My mom was diagnosed with MS shortly after I was born. She passed away with it 20 years later.
I am thinking about seeing a doctor again about it and asking for an MRI to check for MS in case it’s hereditary.
What do you think?
Hi Bob, it sounds to me you’ve definitely got something nerve related going on, but it’s not necessarily MS. Some of the symptoms you mentioned could be related to a herniated disc. I would say definitely get an MRI, I’m surprised you’ve not been sent for one by your Dr. Good luck.
Thanks Neil!
I went back to my primary care today to try to speed things up.
He took blood and is scheduling me for a CT scan because he is thinking I may have blood clots in my left leg and possibly my chest. He is also going to order MRI of my head and back.
Thanks very much for the response. Good luck to you and keep posting your experiences and story. Good luck!
Hi Bob, wow blood clots can be very serious. Good luck mate, I hope you can get sorted. Take care.
@@NeilBradleyMS Bob, I have the exact same symptoms. I am having my first numerologist appointment in 2 weeks. Did they find something on your symptoms?
@@bobhayes2401 did you find out what was wrong with you?
How odd. I have now left about 5 or so comments on various vids, and can't find but the one on this one and another, maybe you have to ok them or something... or I am going nuts, and getting MS symptoms as well .... Anyway I have watched them all now, and have thoroughly enjoyed them, lots of information.... do you have a facebook page as well? I'll share this vid on facebook, you may pick up a couple of views :)
Hi Karen, well it's funny you should say that because I keep receiving emails with your comments but then can't find them either! I'm using my phone at the moment, but I'll check on the PC shortly.
Just checked, and there is no comments held for review.. and you don't appear to be likely spam either lol ;-) On the PC I can actually see all your comments, but don't appear to be able to see them on my phone UA-cam App. Hmm, bit strange that one.
Hello Karen, I've just spent a few moments replying to your comment, so hopefully they will show up for you soon. I'm so pleased you enjoyed watching my video and gleaned a lot of information from them. Thanks for sharing, that's awesome! The whole point to doing my Vlog was to reach out to people such as yourself who can relate. You can find me on Facebook here facebook.com/neil.bradley.37
ok, I found you on facebook, my name there is Lynny Bishop, :) I'll send you a friend request...
Oh good, I'm pleased you can at least see them, I was starting to think I was actually living in the MATRIX with making comments that are disappearing, I should have known it was just the updates done to here and facebook lately.
You're the first to talk about the "plugged into the mains" feeling. I've tried to explain this to family and doctors and they can't understand. I have it down my left side, started with left foot and leg. Now arms. Sometimes weak, sometimes burn, it differs, so it doesn't help when I go to the doctor. You sometimes forget your symptoms since you have so many every other day. I'm currently undiagnosed. I found a c5 herniated disc that they said was the issue for everything. Developed heart PVC's, considered benign. I got a flash of weakness in my forearms and legs. Then I got a sudden feeling of arthiritis, hands, feet, everything hurt and were stiff. The list goes on..but they eventually ruled my neck out. Then found carpel tunnel in both arms so they said that's it, your problems are CP. So now I'm getting a MRI of brain this week. My primary doc said no you don't need rheumatology. He's discounted every symptom. He actually told me and my wife he doesn't know how to help me. Then said I have health anxiety and sent me to shrink. .... We'll see where we end up.
Hey there, and thanks for the message. From the research I’ve done, and my experience a disc problem at C5 can have an effect in all sorts of different places in the body just like you’ve described.
I have an old lesion in my cervical area which still gives me grief, numb tingly finger tips, tingling in my legs when I tilt my neck forward etc. So, be weary of that disc at c5.
Hopefully the MRI scan will give you some much needed answers, it’s just the worst thing not knowing. I know this from personal experience, it took well over a year to diagnose me with MS after having symptoms for a very long time. Now, I’m currently in the process of being re-diagnosed yet again after all the scientific tests are coming back clear (see latest videos).
Its not at all uncommon for these long term chronic health conditions to bring on anxiety. I suffer with this a lot myself, and often at times it very difficult to deal with.
I wish you well in your quest for a diagnosis.
I also meant to comment on the “plugged into the mains” sensation. I’ve got it now, my lower half of my body is humming and buzzing but to look at me there is nothing to see. It does wear off in time and is usually in the morning when I get up.
Great info you need to get another doctor ,wish you well.
Thank you.
Hello Neil, I am really sorry to hear about your current situation. I have been going through alot this past few marks from joint,muscle to bone pains, starting from feeling coldness and smtms heat in the bottom of my feet. Which have somewhat subside but lately i have been getting muscle twitches all over my body. I have surfed the internet multiple times trying to figure out whats going on. I tried visiting my local clinic and try are still at a stand still at whats going on my blood test came back somewhat normal BUT I truly believe I may have MS and I'm scared. I reside in Jamaica and our health care system is not the best it takes forever for test to be processed. I just recently turned 18. My mom is sick as well so I am trying to not stress her out with my health concerns and im just at a standstill. Any advice?
SORRY IF THIS IS A BIT JUMBLED
I hope everything is going well 🙏
Hi Kenya, and thank you for writing to me .. don't worry I understood your message perfectly, it's not jumbled at all.
I am terribly sorry to hear that you're having these symptoms, but also that your Mum is unwell. This must be putting a lot of stress on your shoulders and I can understand totally you not wanting to worry her.
MS is difficult to diagnose, and there is no definitive test.. instead it's a case of ruling things out. So for example if a Dr suspects you have MS (or something else Neurological going on) the first thing they will do is get you an MRI scan, hopefully Brain and entire Spinal cord (sounds scary but it's not that bad). They may decide to give you a Lumbar Puncture, blood tests and eye tests. Taking a history is also very important so I would encourage you to try and remember when your first symptoms started, current symptoms, and any new ones. Keep a journal, this is what I tell everybody to do, this is very important.
I hear what you're saying about your health care system not being the best, and I can appreciate this is very difficult for you which no doubt is why you turn to the Internet to try and diagnose yourself. I do understand, this is a difficult situation. Sometimes however, this can lead you to a lot of unnecessary worry as it's also easy to get your self diagnosis wrong. Having said that, I don't always think it's such a bad thing because it teaches and educates us for when we do have that Dr's visit.
I sincerely hope your symptoms improve and it turns out to be nothing, I also send good wishes and hope your Mum's health improves too. It would be nice to hear back from you to see how you get on.
All the best - Neil.
@@NeilBradleyMS thank you for responding, I read your past comments on this video where someone mentioned that they also had a twitching issue all over there body and someone indicated it could be a calcuim deficiency (so thats what I'm running with for now to keep me from going crazy) and you are right I spend most my time during the days googling and crying my eyes out and that has done nothing but make my twitches worst.
I Still having my twitches and pain here and there. I guess I have done something right those far, as I have been taking notes of my symptoms since the beginning.
I must say, ur really strong, I can't imagine the amount of pain you have encountered on your journey. I wish u all the best.💗
Bless you Kenya, stay strong 💪 💕 Thank you for your kind words. Always here if you need to chat. Take care.
@@jamaican_kenz7115 we're u diagnosed with MS
Bless you I don't have ms but I have spinal stenosis and both my feet legs and hand numb burning electric shocks in my legs chronic pains in my back and legs n hands on 10mg morphine patches also 900mg gabapentin plus 60mg acoxcia 100mg annatriptaline plus bowl's tablets and shake's in a chair use crutches in house hubby my carer ❤ hope you get some relief bless you
Hi Lucy, I’m very sorry to hear you’re having to deal with spinal stenosis. Your symptoms sound terribly painful, hopefully all the medication your taking does take the edge off the horrible pain. What would we do without our amazing spouses eh? Blessings to you, take care now. 💞
Hi, I had migraines and my dr sent me for an MRI to rule out other conditions. I have now started to experience symptoms of MS (tingling in right arm and right leg) tripping over my own feet. I am very nervous for my results.
Hi, and thanks for your message. I'm sorry to hear you're having these symptoms, they're not easy to deal with are they and are very worrying. It's important to note however that it's not necessarily something sinister such as MS. It could well be something like a disc bulge whereby a disc could be squashing into a bunch of nerves which can cause pretty much exact symptoms. When Googling these type of symptoms, the results will always scare you suggesting it could be something like MS or some other Auto-immune disease.. try and remain calm if you can, yes easier said than done I know.
It's good you've been for an MRI scan and set the ball rolling, and very understandable to be nervous about your results.. I've been there many times. I'd be very interested to hear back from you when you've got your results.
I wish you well - Neil.
Thanks for replying back. I’ll let you know the results when they come through. Thank you.
I haven't been diagnosed yet but I think I have ms my feet slide across the floor when walking the hole leg stops when going to take a step forward get electric shocks in my legs my muscles clench tight as if its in a vice I stumble a lot I used to get pins and needles in hands my arms would feel like a dead weight and numb my legs would feel as if I had weights on them I still haven't been diagnosed yet had MRI
Hello Ann, and thank you for your message. It sure does sound like you have some neurological symptoms there. I’m glad you’ve made start in getting them checked out, by having an MRI. Hopefully this would be a full spine and brain MRI which is needed. They may also want to do a Lumbar Puncture (check my videos, I had this done in Feb 2019). Also they may want to take blood and test your vision.
Also, history is important .. try and remember as far back as possible when symptoms started, how long they lasted, are they still present, did they get better after a certain length of time. Current and any new symptoms also very important. Start a diary today. This will really help in obtaining a diagnosis.
Good luck, any questions or need to chat just pop back. Best to you - Neil.
hello sir, i have bearable burning sensation my fingers and toes , left and right, and they go away when i start to move them. it usually attacks me at night, could it be a symptom of ms? and how are you doing now sir?
Hello Funotaku.
Thank you for your message, I am doing quite well over the last few days or so.. hopefully the trend will continue.
As you probably know MS is condition which effects the nerves, and a very scary one at that. Whilst what you describe could quite easily be a symptom caused by MS, it's important to remember there could be multiple other explanations for this also. The fact that your symptoms do in fact go away when you move leads me to think that it could possibly be something like a trapped nerve caused by a disc compression. The only way to find out for sure is to initiate an investigation with your a Doctor, whom will more than likely send you for an MRI scan.
Good luck, and I'd be interested to know how you get on.
Regards - Neil.
Do you have root canal procedure in your teeth, if you don't mind me asking? As some researchs claim it's one of the causes?!!
Of course, I don’t mind you asking, and no I haven’t had any kind of dental treatment to that effect. But I have heard other people mention this sort of thing too.
@@NeilBradleyMS thank you
Im having numbness in my lips and it changes from my hands and to my feet. The doctor did a ct and said "its all in your head" but symptoms are getting worse now my lower spine feels hypersensitive 😐
These Dr's that say "it's all in your head" are so insulting aren't they .. makes you wonder how they became a Dr in the first place. From my experience, if you're having numbness and tingling it definitely sounds neurological and a CT scan doesn't cut it. You need to have an MRI scan of your brain and spinal cord.. this is a lot more detailed scan and will show up any potential problems that might be causing your symptoms.
How are you now? Did you treat your sensitive lower back pain?
Hey there, I wish I could say I was good but unfortunately not. The muscles in my lower back are stiff with spasticity, and they don't want to work. The only thing that makes a difference with pain is a muscle relaxant, but the only problem with that is the meds relax all muscles which make me even wobblier. So it's kind of like a double edged sword. Thanks for asking, I hope all is well with yourself.
After 1st attempt, I'm always sedated. You just have to ask the scheduling Dr.(not mri location) for a written script @ that time. 👍
My doctor just won't take my worsening numbness, feelings of fatness in toes and and finger, loosing balance, difficulty walking , falling over due to lack of balance, tremors on my left side, vision problems and bowel problems. This has been going on for about 6 years. I have no feeling in my hands at all. I wish they would take this seriously.
Hey Fran, that is not good at all.. You have a good old list of symptoms there, quite a lot of people on my channel have commented because they've had problems with Dr's taking them seriously. Have you considered keeping a diary of symptoms and how they effect you on a day to day basis. This diary could then be used to present to your Doctor, and if they still don't listen and take you seriously, I think its probably time to change Dr's. When you say Dr, are you talking hospital Doctor or GP (General Practitioner) as we call them here in the UK?
fran sandling You need to go to a Neurologist.....they can figure it out if u have MS or not......
I’ve been dealing with strange buzzing humming sensations in my lower extremities for years. Its subsided for a few years. But now it’s back. When I tell people about it, they just look at me like I’m a nut job. It’s actually pulsing now. I keep reaching into my side pocket to check my cellphone. But my cellphone is currently in my hands typing this. It’s really bizarre. It’s like There’s an electrical transformer inside my leg. And it’s pulsing just like a cellphone on silent. Almost exact intervals. When it first started happening years ago, I thought perhaps it was where I was standing or sitting. Maybe i was close to an electrical generator or something. But then it continued no matter where I was. No matter if I were standing, sitting or lying down . My feet feel like they are in hot water. This sucks. I’m not in excruciating pain. Only because I’m prescribed pain medicine for a back condition. But it’s really annoying (the buzzing) and really uncomfortable (burning in feet). I guess it’s time to go see a doc. So he can look at me like I’m a lunatic. Somethings got to give. Hope it’s nothing serious. I’m not incapacitated. Just uncomfortable and sleep deprivation is starting to get cumbersome. Thanks for sharing your story.
Hey there, I actually read your message this morning at 4am whilst a small patch on my right shin was buzzing and tingling! See you're not a nut job!! And you're not alone with this. I know exactly how you're feeling, and also how incredibly annoying it can be, yes it is bizarre. The body is made up of nerves, and they've only got to be pinch very slightly somewhere along the way and you'll get a tingling/buzzing sensation where you're not expecting it. It could be something like a disc in your back, it's not necessarily anything sinister like MS. I do suggest you start getting it checked out by the Doc thought especially now as it's effecting your quality of life. I always say to people, keep a journal of symptoms both past and present. Try and remember if you can when they start, for how long and if they got better, when did they re-start, how bad is it now. The more information the better because diagnosing these problems is often all about the history (and current symptoms). Good luck my friend - all the best - Neil.
I just started experiencing that same sensation a few days ago and im freaking out. The first day i was reaching for my phone thinking it was a text or an alert but to my surprise i hade it on ring mode only. I'm going to wait a few more days before i reach out to my doctor. I'm really hoping is not something serious...
Hey Vic, try not to freak out.. I realise It’s easier said than done. Where is the buzzing happening, and are you able to do anything to bring on the sensation, or is it completely random?
@@NeilBradleyMS its happening on the outside of my right leg, above 10" from my knee. I know its been 4 to 5 days now, but it only happens when I'm at work...? if it continues i will defenitly make a doctors sppointment.
Was your buring sensation constant for long duration or its random short lived one?
Hi - pretty much constant for long periods of time, then it can ease off or sometimes get even worse.
@@NeilBradleyMS i find my leg burns if i over do it. ugh.
I've had that same numb sensation you're talking about, although it's mainly in my lips and to a much lesser extent in my legs. I'm debating about whether I should get it checked out immediately or wait to see if it improves.
+Salvage Edith Hey there, I would definitely get it checked out asap especially as these new sensations are the exception to the norm.
thanks for the video. i have a similar story, transverse myelitis last summer. i almost fully recovered through the year and just experienced a second bout of the same symptoms. tingling legs, weird sensations in my feet. my hands and arms have been on so far. still in the diagnostic process. more MRI's to come. the first MRI caught two lesions in the spine. Very scary and terrible year. Really hoping these symptoms die down !
Wow! Transverse Myelitis, I was also diagnosed with that in the very first place back in 2007. Sounds like you're suffering very similar symptoms to myself, a relapse occurred with me in 2012 and eventually diagnosed with MS in 2013. Thoughts are with you my friend, would be interested to know your progress.. Good luck. Best regards.
Yes, I also have an l5 bulge too that's impinging both of my exiting nerve roots. Sound familiar ? Haha. I'll find out more in the coming weeks. Not thrilled about an ms diagnosis, but all signs point towards that. I'll comment here on my progress , or lack there of
+Jon Derildable Yes, sounds very familiar! Look forward to hearing back from you Jon, good luck.
This could have been me. So similar - I get it... Trev
Yep, you and an awful lot of other people very similar.. cheers👍
I had similar symptoms.
I hope you know about dr terry wahls.
Incase you dont know watch here video on youtube...
Her tedx speech is inspiring
only for 2 days. left foot. isolated to heel part only. only happens when a cross my legs indian style.
any thoughts? it isn't numb. it's vibration only.
Hi there, thanks for the message. It’s not necessarily something sinister like MS. I’m no Dr and this is not a diagnosis, simply my honest opinion. It sounds like the action of crossing your legs could be squashing a nerve causing your feet “hum” or “buzz”. If when you uncross them, the sensation goes away, then almost for sure. If however it continues, you should always speak to your Dr and get their professional opinion. I hope that helps. Another thought would be a disc in your back, this is what happened to myself back in 2012 but for me, turned out to be a red herring.
I've been having tingly sensations in my legs for the last year. It almost feels like an electric energetic feeling, If that makes sense..Also, I've had this uncomfortable feeling in my side for years...my muscles in that area get really tight and I get an uncontrollable urge to tense those muscles up regardless if it hurts or not. I know something isn't right, I'm just not sure what.
Hey there, apologies for the late reply.. for some reason UA-cam never notified me of your comment. Yeah makes complete sense to me, but as you probably already know its important to get this check out because there are several other conditions which can cause very similar symptoms. Go with your instinct and get yourself check my friend.
Same thing here. My neurologist won't do anything to help. Just gave me amitriptyline.
Did you figure it out? I am having the same issues abs no one can figure it out. I’m currently on Gabepetin. Some days I’m fine and other days it’s unbearable
Hey there, well I’m still not convinced they’ve got the diagnosis right. Im now diagnosed with a condition called Neuromyelitis Optica or NMO, after being diagnosed with MS since 2013, and before that Transverse Myelitis. They all come under the same Auto immune disease umbrella though. I think this latest diagnosis is close but I’m still not convinced. I know this though, I’ve definitely got inflammation of the spinal cord because my symptoms usually improve when I have iv steroids at Hospital. Im sorry to hear your suffering with similar horrible symptoms, I hope you’re coping ok. Take care. 🙏
I have feeling like vibration in my feet can't see but feel only ....
I know that feeling very well.
hawa ki beti
Me too
(Your not alone)
In case someone find this. And is also suffering...
Here is what is working for me.. (its just 3 days and little early to conclude. But i thought to write here incase i forget in future)
Mostly the main reason for buzzing sensation is you are low on vitamins.
Specially the whole B family.
Please please please, take vitamin b complex for this.
B1, B4, B9, B12 are most imp except others.
Also if you are suffering with this for long time. I would recommend dont rely on pills but take an injection instead (definitely consult your doctor) (but most of the time doctors are reluctant to what we say to them, ego issue i guess)
Also take calcium, i believe this has worked for me. (take this with your lunch) (hypocalcemia - low calcium level, causes involuntary twitching). Take D3 supplement too, as almost everyone lacks it.
Vitamin B should not be taken with calcium, as calcium decreases the absorbtion vitamin b. One can take vitamin b in morning as the absorbtion is maximum.
I dont believe prescription is at all needed for all above mentioned. (even after doing the above mentioned, for a week or 2 week. If you dont feel good, get help from a doctor.)
Below is a link to a great article. I would urge you not to read the comment section. They are demotivating and 2 years old.
heelthatpain.com/vibrating-foot-pallesthesia/
In case people think they have MS. I did think that... Watch tedx video on youtube by 'Dr. Terry Wahls'
An inspiration.
Also these vitamins are helpful in MS.
If vibrations are due to nerve damage due to compression in spine area or near ankle (tarsal tunnel)
Vitamins will surely help along with physiotherapy.
But the start is always vitamins, be it any condition.
Also when i read, i came to know many people got benefited by taking potassium. So you can try that too. Its just 3 days for me, if it doesnt get better i will try potassium too.
Blessyou. I recommend you a video ( beat multiple sclerosis through diet ) . You should watch
Thank you, and I'll check it out :)
Yes a lot of what we eat is the cause of our deceases
I keep getting eyelid spasms with an occasional sharp pain in my left eye did you have anything similar I'm worried it might be ms
Hi Anthony, I’ve not really experienced this. If you consult Dr Google with these symptoms you’ll probably scare yourself silly. There is no definitive diagnosis for MS, it’s more about ruling out certain symptoms, tests and scans. Your medical history also plays a big part, so if your worried a good idea is to keep a journal of both past and current symptoms and concerns. Hope that helps.
@@NeilBradleyMS thank you
Could MS start in spinal cord and not in brain? I did a brain and neck MRI and was clean so I suspect maybe it's in spinal cord. Everything started with a UTI then some sensory problems in my genitals then in my legs.....still don't know what's going on.
Hi There, and thank you for your message. I'm terribly sorry you're suffering with these symptoms and I can well imagine how worried and concerned you are. You definitely need a full body MRI, this will include Thoracic (mid back) and Lumber (lower back) because if you've got sensory symptoms in your legs and genital area, in my experience and research this could be caused anywhere in your spinal cord not just the neck. I have absolutely no lesions in my brain!! But I do have a lesion in my mid back (thoracic) which give me all the pain and weakness. My story is a long and complicated one but I want to try and re-assure you that this issue might not be anything sinister such as MS even though the symptoms are similar. Keep pushing your Dr's if things don't clear up.
Thank you so much for sharing this video..... I know is a old video, but it help me so much, Cause I was starting feeling this way on 9/2015.. And I told toDr. And they said is anxious, but I knew is something else and you pin points it just right....now I have difficulty walking and standing and numerous of numbness in the legs , hands, fingers.
Hello VR .. I'm so terribly sorry to hear you're also feeling this way. In my experience, a lot of Dr's just don't understand so they put it down to anxiety. It makes me feel like telling them, they should spend a day in our shoes eh! Even just one hour! They then would know different. You know your own body, and you knew something was wrong back in 2015. I do hope you've now been diagnosed and getting treatment? Take care.
thankyou
You’re very welcome. Hope the video was helpful. 👍
I have had MS symptoms for nine years with no diagnosis.
There are days, and once even a whole week, where I could not get out of bed on my own.
Vision problems, and kind of a reverse carpal tunnel.
Uhthoff's phenomenon is the worst. I have to make sure that my fiance is in hearing range before I can even take a shower.
My question is, have you ever had like a tingling numbness in your shoulder blade? I get that in my left shoulder blade, and I have no idea if it could be related. My doctor thinks I just sleep wrong. (She said that about the neck pain, shoulder pain, and arm numbness, too.)
Also. How do you deal with everyday tasks? The pain and weakness in my legs makes even sitting almost unbearable. Have you noticed anything that helps?
Hi Ana, thank you for watching my video and commenting.
I too have been suffering symptoms for nine years (since 2007), and it was a long old journey leading up to my diagnosis in 2013. It sounds like a lot of your symptoms are very severe and debilitating, I'm sorry to hear that.
The Uhthoff's for me is only an issue if I take a bath (as opposed to a shower) as the soak in warm water is enough to raise my core body temp and effect my MS. Also, being out in the sun can sometimes effect me but not every time. Oh, the Uhthoff's really does kick in when I'm ill with a virus, for example I recently had Tonsillitis but before I knew I actually had it my MS symptoms started flaring up. I made a video about a flare-up of symptoms, and then another shortly after when I realised I'd got Tonsillitis. If you check out my MS Vlog playlist, I think its the last couple of videos I did.
ua-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
It's sounds to me that you would greatly benefit from a course of IV Steroid treatment, this is standard treatment for people with MS, it greatly helps reduce inflammation. For me back in 2013, I was really struggling.. I could barely walk at all, my balance was awefull. About 10 days after the steroid treatment, I noticed a considerable improvement.
I've not had any kind of tingling in my shoulder area, I'm no doctor but what I do know is this.. the tingling will be nerve related in some way, whether or not that the MS is causing the issue or you have a trapped nerve or even possibly a small disc bulge in your neck. I know that when I first when to the Dr's with all my symptoms, he said and I remember his words clearly, "you've got a good selection of trapped nerves there". There were never any trapped nerves though!
You really need to get yourself checked out if you haven't already done so, have you had an MRI Scan? This will reveal what is going on in detail. It will also show up any nerve lesions where the suspected MS has destroyed the Myelin coating.
Everyday tasks can be quite a challenge can't they, things we used to take for granted simply isn't easy anymore. Moving around the house I'm always looking for the next thing to hold on to, I've also had falls. Most of the time for me I have a tightness feeling in my legs, at the moment though they aren't happy and I've got burning which is the nerve pain, my feet are also very numb. If you're struggling to even sit comfortably, I would urge you to try and get some treatment to make your quality of life more bearable. I'm in the UK and fortunately we are blessed with the NHS, I totally appreciate its not as easy though if you live in the States. I've recently been speaking with somebody who has all the symptoms of MS but doesn't have medical insurance, so I do understand its not easy. I really find it difficult to comprehend that there are people suffering with this horrible condition and can't get treatment because its so stupidly expensive and out of reach for so many people.
I take a drug called Pregabalin, (other known as Lyrica), this calms the electrical activity in the brain and helps reduce the tingling and burning sensations. I don't like taking drugs at the best of times, but we have to balance things with quality of life.
I really do hope things improve for you soon Ana, thank you for contacting me and feel free to come back to me any time. I hope I've helped a little bit.
Kind Regards,
Neil.
I guess I am going throw the same path you have, hard to get a diagnosis,they seems don't care at all. keep saying I don't need it, trying to get a private one with a low budget.the NHS is just simply hopeless.
Ana I would like to ask under that condition how do you managed your day to day life or working???
Hi Neil thank you for sharing your video and experiences.
Hey Utopia, thank you for watching.. I hope you are well at the moment. I see in your comment to Ana that you are struggling to get a diagnosis, may I ask what sort of symptoms you are experiencing? (Oh and thank you for subscribing).
I know how you are feeling, believe me. I've been trying to get my doctor to put all my symptoms together and for the light to switch on in his brain. Even my 3 grown up daughters have suggested that I have MS. I've started doing some serious research and I'm shocked at just how many symptoms that I have. It's so obvious that it's screaming. It's really good having others to communicate with. Some days if I fall over I don't have the strength to lift myself up . Sometimes I wiggle on the floor trying to get to a pull up point for over an hour. When I make it there it takes so much effort trying to get up, because my muscles feel too weak to lift me. I in fact pull my muscles trying to get up. The next day is very painful as my muscles are pulled. I'm only 54. This started with or at the same time as a chest infection about 5 to 6 years ago!
Hi Fran - Strangely enough, something I've not included in any of my videos is back in 2007 when my symptoms first started I also had a severe chest infection whereby I pretty much completely lost my voice. Shortly after all of my numbness symptoms started in my feet, but I never really thought anything of it . Keep hassling your Dr, perhaps you should consider taking one of your daughters with you to help fight your corner.
My first symptoms where different. I had Virtigo.
Hello Neil. Do you have Tinnitus as a result of MS? Thank you
Hey there, I do suffer with quite bad Tinnitus but I don’t believe it’s a result of the MS. It comes and goes. I do know that a lot of different medication side effects is ringing in the ears, so it think it could be a contributory factor. It’s always worth a quick Google of yours meds or if you’re about to start anything new. I like to know what I’m dealing with and way it up.
@@NeilBradleyMS I have T for 9 years and a couple of more symptoms, I don’t think it’s MS because I have done an MRI with my neurologist around 2 years ago. Although about a month ago I started also feeling a bit dizzy and having tingling sometimes in my left fingers, no numbness. I have what appears to be the Very rare Visual snow Syndrome, it also produces tingling and dizziness. Thank you anyways for your answer! I hope everything stays well for you, fortunately science is evolving good with MS also.
Thank you. I know what you mean about the visual snow, there’s a medical name for it but I can’t remember. I researched it some years ago, because I can see something similar especially when I look at the bright sky. If it’s the same, it something like white blood cells moving through the capillaries in the eyes which causes like sparkly snowy effect when looking at a bright background. I’m not sure if it the same as what you have. I hope things improve for you.
Hi there, just wondering if you ever have heard of or had a burning scalp/cold scalp patches or cold spots on face as part of MS symptoms? I get this a lot lately but it goes away as soon as I stand up only to come back when I sit down
Hi Claudia, thank you for commenting.
Yes, I have heard of people with MS having these hot/cold spot on their face/scalp area, particularly numbness as well. Interesting how you say it goes away when you stand up, that would suggest it could be movement related.
What comes to mind when I read your message was, sometimes I can be standing up and if I gently lower my head as if putting my chin on my chest, I will then get a tingling in my legs!! So the movement in my neck is causing the sensation in my legs, this can only happen (I think) if a nerve is being pushed in my neck which is connect to my legs etc.
Could this be something similar which is happening when you are standing up, perhaps a nerve is being squeezed somehow by a disc maybe, or possibly trapped? which is causing the sensation. You would need to have an MRI scan to do further investigations. Have you being diagnosed with MS, or are you in the process of researching your symptoms?
Good to hear from you - Neil.
Hi and thankyou for replying! No I haven't been diagnosed but am doing a MRI on Friday, the docs reckon more for peace of mind because they don't think I have anything wrong and these symptoms have made my anxiety shoot thru the roof, so much so that I'm afraid to sleep at night :( Most people I ask think it's muscle tension/restrcted blood flow to my head and tension which is causing it due to the positional thing and how it does lessen or go away if I massage my neck somewhat. Hope you're doing well......so brave!
Hi Claudia,
Thank you, I'm doing a lot better today than I have been the last couple of days for sure.
I know exactly what you mean about the anxiety and sleeping at night.. I've been going through a spell for the last couple of months whereby the pain in my back and legs in bed is so bad I'm getting very poor sleep. I actually got to the stage whereby I was worried about going to bed and perhaps I'd be better kipping on the sofa!
Hmm, your carotid arteries are in your neck and there main function is to deliver blood to your brain.. I wonder if its possible your massaging these arteries and your getting relief from your symptoms somehow.. not really sure but definitely mention that to your Doctor.
Hopefully you'll have some answer on or after Friday's MRI.
Take care - Neil.
My great grandad died from ms and I think I have it because I feel ill everyday I've been doctors and they say I'm ok but never been tested for ms. I'm only 24, am I doomed?
+tyler24393 Hey Tyler, not at all! MS Can cause a variety of different symptoms but rarely does it kill. What sort of symptoms are you experiencing?
Salad Stop jumping to conclusions, your fine.
Hello I have the same problems and also I had a brain disease 2 years ago these doctors these days thinks we crazy and they act like they in our body or we mental I have been going through this since 2012 Thanks for the beautiful videos my feet’s burns so bad sometimes I wanted to call the fire truck lol.
Hey there, you can call that fire truck for my feet as well then 😆 Wow, you had a brain disease.. how scary is that!😲. Hopefully you’ve fully recovered from it now. I often say, the Dr’s should walk a day in my shoes. Glad you’re enjoying the videos, appreciate your message. 🙏
Mine burn constantly i wish i could get an ease for 5 minutes but what to do it could be worst it could be Als. I'll take the pain 😂😂😂
@@shawnmcanthony5724 I just had back surgery the doctor in Louisiana went in my back 5 times like in weeks it just made a year they said the burning coming from the back and I have screws pins and all in my back and my feets still burns bad the good doctor dead u have to dig a good doctor up these days and I am not on no pain pills But be in pain.
Numbness in fingers and toes. Was what I meant to put down
Understood Fran, no problem.
the prickly feelings hurt
erythromelalgia is what you had i would say. it matches. It is rare but can come with MS. I have it and the burning can be indescrible. my journey was before 2000 my main symptom was blindness in one eye. yes turned out later i had optical neuritis. I went to neuro in 2007 with same issues with feet. I described the symptom to my neuro as like wearing a pair of wellies with a hole in then walking through snow slushy ground lol. he found i had no feeling from knee down in my left foot. long story 2016 after a ton of tests and 2 vep tests, mri ETC ETC, WAS TOLD I HAD PROGRESSIVE ms.
WOW!! You've really been though it haven't you, I'm sorry to hear you've got a PPMS diagnosis. I've done a lot of research myself, and I tick a lot of the PPMS boxes .. I present my findings to my Neuro but she disagreed immediately and said no. They're meant to know best aren't they, but we're still entitled to disagree with them.
I had to Google Erythromelalgia as I've never heard of it, but when I start with symptoms in 2007 (as described in this video) my feet would be Lobster RED and BURN like crazy, unbelievably painful.
Google results were "Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature."
Incredible, symptoms are absolutely spot on !!
I don't get this no where near as bad now, but I did when it first started back in 2007, in fact now it's quite the opposite apart from in the very hot weather, my feet are incredibly painfully cold. I continually have to warm them on a hot water bottle because the cold create SO MUCH pain I literally can't think properly sometimes.
I found it very interesting reading about how your feet felt (wearing a pair of wellies with a hole in them and walking through snow). The way I used to describe the sensation was, it felt like my legs were set in concrete, or plaster casts. Then, when I walked it felts like I'd got stones glued to the souls of my feet!!
@@NeilBradleyMS oh my goodness i said to my neurologist i was kidnapped by the mafia and they put concrete caste on my legs lol. honest injun. with "Erythromelalgia it can get better and change. You have been on steroids so it would have an effect.
when mine started i never had a day without symptoms. it was constant. I am so used to it now. If another symptom arrives i just welcome it. some of the weirdest BEE STING oh my god. I remember one day in the garden screaming as i swore a bee had got into my trousers lol, i was taking my trousers off in the garden shouting at my husband i am being stung by a bee help me......NOTHING. It happened several times over the years. the spiders the tarantulas crawling over my forhead. hell it got so bad at one point i kept a mirror by me to have a look as i could have sworn i had something running around my face lol. Having a shower right and not being able to feel the water hit my back. If i tried to look up i would over balance. the worse one walking yes at the beginning i was walking in the supermarket slowly with my daughter and suddenly i forgot how to walk. the stupidiest thing i went flying forward and ended virtually upside down in a freezer with my daughter behind me have a right laugh lol. I dont worry about about my MS anymore it is what it is. I am 70 nearly and at my age bits start to fall off anyway lol. I never had steroids as they dont work for PPMS. what DMD did they put you on? sorry for essay.
Hi there, it was similar for me I too never had a day without symptoms but I noticed over a period of about 4 years it all calmed right down but never completely went away. That was back in 2007, now everything is back with a vengeance. Oh, in the shower and not being able to feel the water, I get you! For me though, it my legs below the knee .. I can feel the water but it takes a few seconds for the sensation to register, and the temperature. My left leg (which used to be my good leg) is the worst, it's still disconcerting though isn't it.
For a while the DMD they put me on was Rebif but it didn't suit me, so they put on Copaxone. I stuck it out for two years, but then could no longer cope with the painful injection site reaction, I took the decision to pack it in and then I was on nothing for a good few years. Because MY diagnosis is no longer secure, and they think I've got NMO (Neuromyelitis Optica) I'm on a 1st line treatment called Azathioprine which suppresses my immune system to try and stave off the attacks. I'm in the process of going on to a 2nd line treatment (more expensive) called Rituxamab. Just a waiting game.