MOBILITY OR VISION - DECIDE?: Prednisolone Side-effects|Eye Floaters|MS|NMO|Potential Re-diagnosis!
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- Опубліковано 21 гру 2022
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▶︎ My VERY FIRST Symptoms - • Multiple Sclerosis - M...
▶︎ My MULTIPLE SCLEROSIS Diagnosis in 2013 - • Multiple Sclerosis - T...
▶︎ The VERDICT, MS or NMOSD - • The Letter | The Verdi...
▶︎ My SHOCKING Consultant Visit - • NEIL'S SHOCKING CONSUL...
▶︎ This is what happened to me after IV STEROIDS - • WHAT HAPPENS WHEN YOU ...
▶︎ BEFORE and AFTER IV Steroids - • CHRONIC ILLNESS DAY IN...
▶︎ Never thought I'd be WALKING like this again!! - • NEVER THOUGHT I’D BE W...
🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
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I wish the medical people would get their acts together on your diagnosis! I am so sorry you are so stressed. (I totally understand) I hope you can get some relief somehow! Hugs! I've missed you two!
Teresa is about the only thing that puts that lovely smile on your face, Neil, even in the shaking cold weather!
Regarding the rest of what you shared here, and knowing how highly intelligent you are, I'm compelled to suggest that you take some of the medical advice and/or lack of medical advice as indication that many doctors know very little about auto-immune disease in general, and kind of look at a person presenting with "odd" symptoms with a kind of glassy look in their eyes (pardon the play on words). I also am experiencing the same with my eyes. They are dull looking and my vision is exactly as you described, and i've never been on anti inflammatory medications of any kind. I believe it may be the blue light behind computers/phones that could be causing this. But who am I to know?
My MS is progressing quickly now. I dusted off the wheel chair last night. Oh dear, oh dear, the hardships of our lives, and so many others.
May the Lord help all the suffering ones, with His comfort and help in time of need.
Hi Elaine, I too am already of that opinion about Dr's.. but not all of them, a lot though. Sometimes I feel I actually know more than Dr's themselves. I'm really sorry to hear you too are suffering with floaters, they truly are distressing. I've noticed one of the best ways to cope with them is to "try" not to watch them, as this increases the anxiety big time. Easier said than done though right? I've always wondered what caused my floaters from a very young age (late teens/early 20's), I've always put it down to looking at screen as that was my hobby (computers) then later my job (computer programming). As you say, who knows!
Oh my goodness, I'm terribly sorry you've have to break out the wheel chair, certainly not a good thing the MS is progressing quickly. Personally, I have a great deal of difficulty dealing with being in a wheel chair, so I've opted for a Scooter which I think I'm coping with a bit better. This will be in a video soon when I've finished putting it together.
Best to you.
Sorry to hear this Neil, the medication we take are doing all kinds of damage to us but the doctors tell us we need them to survive, it sucks so bad, my mobility is completely gone and I'm still getting worse day by day, I sit and cry daily thinking about my passed and doing things ,I wish I could tell you something positive, I'm sorry friend
Hi Chris, I do understand.. I too often just sit and the tears come when I think about my past. It was only ten years ago I was full power without any weakness, I feel so broken, as I'm sure you do yourself. It's not just the mobility though, it's the incessant pain that comes with it, even now as I type this I'm hurting so bad, I rarely get a break. Nobody should have to cope with this, and for how long? I just shake my head in dis-belief. I wish there was something I could say to make you feel better my friend. Just hang in there, know that you're not alone. Take care - Neil.
I pray you get the answers you need. As someone with MS I understand about losing your mobility. God bless you both. You're a beautiful couple.
Thank you Gwendolyn, that's so kind of you. 🙏
Neil, doctors drive me bonkers as I’ve been waiting for 16+ years for some sort of a diagnosis for my “MS type” symptoms. I’m sick and tired of being sick and tired but keep on keeping on😊. You and all your followers help me with this and I feel quite blessed to have you all as my brothers and sisters! Thanks to all!!! God is awesome to bring us all together isn’t he?
Indeed he is awesome! It's strange to be honest because I've never really been a religious person, but since being ill it's made me look more deeply at my mortality. What I cannot accept is some people go through life without so much as a headache, then there are people like ourselves that never seem to get a break, right? I draw comfort from the fact that one day I will be free of this faulty body and once again regain everything I've had taken away so cruelly.
I get it, and I totally understand you being sick and tired, of being sick and tired.
I'm so SUPER HAPPY that my channel helps you feel blessed and perhaps not quite so alone. It's comments such as yours that inspire me to keep going with the channel, so thank you.
I hope you had a nice Christmas, and I'd like to wish you all the best for the new year.
Neil. 🙏🤗
@EMS dont give up took me 16 years. i was finally diagnosed with PPMS. PPMS presents differently and a lot of doctors have never seen a patient with it. its rare only 1500 in UK WITH IT. you dont get relapses or remissions, it is ongoing from the get go. Mine started with Optical Neurtitis which took time to diagnose with a V.E.P. Turns out i have had it several times last VET which got me my diagnosis showed it had got a lot of worse. I was so relived when the doctor finally said you have progressive MS, i am sorry it took so long to get it for you.
Thankyou!
Doctors tell me “It’s never going away” yet they can’t tell me what “it” is. I’ve been tested for Lyme, Sjogrens, Stiff person syndrome and currently waiting for Myasthenia Gravis results. When I tell them that all my symptoms seem to point mostly to MS I’m told No🤔
I’ve finally accepted my new life (like I have a choice😂) and just keep my focus on taking it one day at a time; letting my Heavenly Father guide me each and every day.
“He only is my rock and my
salvation;
he is my defence;
I shall not be greatly moved.”
Psalm 62.2
Update: Myasthenia Gravis test came back negative as I believed it would. Great news but still no answer. Just keep on keeping on!
@@EMS-hp9tf like i said 16 years no answers but it was there all along. I expect it will be PPMS or a form of MS in the end. they just cant see out of the box, glad my neurologist did.
Catching up up your Vlogs Neil. I feel for you mate. Take care. Makes my Rhumatoid arthriritis feel insignificant really
Thank you I appreciate your interest in my channel. Rheumatoid arthritis, is horrible and extremely painful. It doesn’t matter what you’re going through, or what condition you have, pain is pain, isn’t it, and everybody deals with it differently. I do hope your arthritis is somewhat under control, I have a friend with it and know how debilitating it is.
Nice to see you Neil hope you and Teresa have a lovely Christmas x
Thank you Dena, I hope you had a wonderful Christmas. Wishing you a lovely near year also, take care. xx
Hi Neil, I am sorry to hear about what you are going through.
Sending you prayers, take care.
That's so kind of you, your prayers are gratefully received. I do hope that all is well with yourself, you take care also. 🙏
So glad to see you.
Look after yourselfs
Merry Christmas🎄
Merry Christmas Michelle.
Neil! Good to see you! I was just taking a break from editing one of my videos to grab a bite to eat when your video popped up.
You are indeed a unique flower, I hope they can settle on a diagnosis for you so you can get appropriate treatment.
Thank you Vickie, and it's nice to hear from you also.
It's so good to see you both again. It was just last night I was checking your channel for updates. I hope you both have a wonderful Xmas 💗. I have vitreous detachment also following head trauma so I sympathise with you completely. I look forward to seeing your other video once you've edited it. Sending hugs to you both 🤗 ❤️
Hello there! It's lovely to hear from you. I'm sorry to hear about the Vitreous Detachment, after much research over the years I'm quite familiar with this. I expect you're suffering with the dreaded floaters also then. That's so nice of you to keep a check on our channel, thank you so much.. honestly it's comments such as yours which inspire me to keep working on the channel.
Thank you so much for keeping us informed. I know it's hard.
Hello there, and thank you so much, that's really kind of you. I hope all is well with yourself. Take care.🙏
Hello Neil, thanks for sharing your journey. It serves as an inspiration for thousands. I deeply appreciate the effort you put into making these videos. Hope you feel better soon.
Hello there! And thank you very much for your kind words and your kind message, it’s messages such as yours that inspire both myself and my wife to continue making videos. I sincerely hope all is well with yourself, take care and all the best. 💕🙏
God bless you Neil, it has to be so terrifying for you that the doctors don't really know what's going on. All I have to say is keep on going and God bless you and Teresa.
Thank you Pedro, yes it very worrying indeed. Blessings to you also. 🙏
Really nice to see the two of you, have a lovely festive time.
Thanks and you too Paul, all the best.
As a fellow MS'er I really feel for you buddy. I hope that you can get the floater as well as mobility issues sorted out. Cheers mate!
Thank you so much, I really appreciate your kind thoughts. 🙏
Oh Neil! I’ve been thinking about you a lot recently. I was hoping you’d have some good news - but realise that isn’t quite so easy! I’m hoping too that the doctors can find something other than prednisone to help you, that causes less side effects. Especially visual. Just having terrible cataracts had me lost..inside my world. It made life so difficult to cope with. It was isolating. Being chronically sick is tiring enough that doing things you love - like videos etc - can just wipe you out completely. That’s if you ever actually start things! Appointments and bad days are the bane of our lives. I’m sending you lots of love to you and Teresa, and wishing you a very Happy Christmas! ❤ 🇵🇹 ❤️
I couldn't agree more Susan, ohh and it's so nice to hear from you. Yes, I don't want to get to the stage whereby I'm developing Cataracts or even Glaucoma due to taking Prednisolone every day, think I've just got to take the risk and try and cope with what else life throws at me. Even now as I type this message, blankets of floaters are drifting by and it's so distressing.
Wishing you too a merry Christmas, and sending love. Take care. xxx
Hey Neil, it's so great to see you do an update 😃. I've mentioned to you before, I've got Parkinson's
so in many ways I totally get what your saying. My husband has Rheumatoid Arthritis so between the two of us we have nothing but Drs appts 🤪 I am a mixed bag of diagnosis as well. My neurologist reluctantly has me down for Parkinson's but I don't exhibit the normal signs of it but he also feels I have a dementia as well.
I agree on that point but it's hard to swallow at 58 yrs old. So I just carry on the best I can each day which is hard due to all the pain and stiffness in my legs.
What I like about you Neil is your positive attitude with your wife 🌺
When you waved and smiled your whole face lit up ☺️ She would be so lost without you Neil. Love like that despite everything else is a precious gift. On top of all my issues like yours, pile on it emotional abuse of over a decade.
If I didn't have my faith I would have checked out a long time ago
from everything. I do enjoy the little things and all the beauty in the world. That's what keeps me going Neil. Please keep going for your lovely wife and see all the little things 😊 🌺💕
Hello Tory, how lovely to hear from you again.. and yes I do recall chatting with you not long ago.
I understand where you're coming from when you can't get that concrete diagnosis, when you don't fit that 'exact' criteria. After all my years of experience with Dr's, hospitals and insecure diagnoses, it's very clear to me that medicine is certainly not a precise science. It is very frustrating thought isn't it, and as you say especially when you're experiencing symptoms such as difficulty swallowing and at 58 years old also. I am sorry to hear you're having such a terribly and what much be frightening time, but as you quite rightly say we just have to carry on best we can don't we and take each day as it comes, sometimes each hour!
Thank you for your lovely kind words, yes I truly would be lost without Teresa, and she without me. We are one! Talking about faith, I've never really been a religious person but recently with my health as poor as it is, it gets you thinking about life and what's after. Especially as living with an illness and for how long, it's a very comforting thought to know there is something else after we 'check out' and that we will be rid of our faulty bodies.
As you quite rightly say, it's the little things in life, take good take of yourself and I look forward to hearing from you again soon. - Neil. xx
I'm so sorry you're having to go thru that! MS is frustrating! I've been on crutches 11 years and although meds have helped for severe leg spasticity, it hasn't helped with balance or staggering...just had a 7th back surgery, with a 5th fusion, I have 28 screws iny back, from t4 to my sacrum, both hips replaced, a knee replaced, and I'm still in severe pain, so I totally understand your frustration...I hope you both have a wonderful Christmas! 🙏💜
Hello Suki, thank you for your message and sharing your experience and symptoms. Indeed it is very frustrating! My goodness!, it really sounds like you've been through it over the years with all of your surgeries, I'm terribly sorry to hear you continue to be in so much pain, I do understand. I hope things improve for you, I hate having to rely on pain killers, and even they don't help a lot of the time especially as the body builds up a tolerance to them so easily.
I hope you had a lovely Christmas, and I wish you all the best for the coming new year.
Take it easy - Neil. 🙏💕
It is GREAT to see you and Teresa, Neil! Sorry to hear of your bad side effects of taking Prednisolone. I on the other hand had to take IV steroids several times to prevent permanent eyesight loss. I guess that is the good and bad of this drug, as with all drugs. It's up to each of us to weigh what we think is more important to the quality of our lives. I too know that the quality of my life would be horrible without my eyesight, so I choose to take IV Solumedrol (steroids) when needed. Hang in there, and know that we are all saying prayers for your well being❣
Hi Rona, lovely to hear from you also.. Yes there are definitely good and bad sides to taking these drugs. For me the Prednisolone is keeping the inflammation down in my spinal cord, and I know by reducing it my mobility and pain is going to get worse, and it is doing. But I need to prevent my visual side-effects from getting worse as I'm not coping with the floaters very well, even as I'm typing this message shadows are drifting all over the screen. So I feel I have no choice really, such is life.
I too have had the IV Solumedrol (they call it Methylprednisolone here in the UK), I usually go in to hospital and have 1Gram by IV each day for 3 days. When I first started having this treatment it used to work really well for me, I was like a new person after about 10 days, my mobility improved massively and so did my pain. Sadly not any more though, not sure why.. when I asked my Dr she just said disease progression.
I hope you had a nice Christmas, and I wish the the best for the new year. Take care. 🙏💕
Send all my love. Merry christmas!!
Merry Christmas to you also, and I hope you have a Happy New Year.
For All of us…
Joshua 1:9
"Have I not commanded you?
Be strong and courageous. Do not be afraid; do not be discouraged.
for the Lord your God will be with you wherever you go.”
Hello Neil 😀,long time no chat!. I really do hear you& can understand how you are feeling.It stinks doesn't it ?It helps when you have people with same problems to chat to.I hate telling my nearest& dearest because I feel like I'm moaning & whining all time.I do hope you can find that balance & get best of all worlds.🙏 I've been told this year that I now have secondary progressive ms.Im on that slippery slope down now it seems.I feel that I have upset my ms nurse because I changed my mind on taking siponimod.I spoke to a different nurse this wk& she's sending me for counselling because they want me on this drug.She asked me how I was getting on & when I said my arms hurt alot & my hand is weak she asked me what I was expecting from them?I said I don't know you tell me? I'm not sure what she was getting at ?Try& enjoy Christmas & you& your lovely wife stay safe& warm.🤗🤗🤗💐💐
How lovely to hear from you Sharon, and thank you for sharing what's happening with you at the moment.
It sure does help when you speak to people going through the same thing doesn't it. You not alone Sharon, I too feel like I'm moaning and whining all the time. I say this to my Wife, I say I feel like all I do is moan and groan with pain, but that is because it REALLY IS so difficult to move about, and painful. Teresa TOTALLY understands though, and NEVER makes me feel bad ever, I'm very lucky to have her.
Hmm, I wonder why they want you on that particular drug so much that they're sending you for counseling. I have to say, it's a drug that I've not heard of so I've just had to Google it. You shouldn't be feeling like you're under pressure to do anything, it's your body and it's up to you. It's their job to highlight the pro's and cons though, but I totally understand if you feel uncomfortable with it.
If ever you need to chat or run something past me Sharon please give me a shout.
I hope you've had a nice Christmas.
Best to you - Neil.🙏🤗
Hello Neil, I am in Colorado with my daughter, son-in-law and two grandchildren for Christmas. It is -6 degrees at the moment and watching you speak to us made me get chilly.😆 Good to hear from you. I too have suffered with bouts of floaters now and again. Sorry about the continueing struggle with just what is the problem. Oh BTW Aug 30 2022 I had another spinal fusion, this time T-10 to S-1! Now ROM is ready difficult. Take care, thanks for the update.❤
Hi Lee, I hope you have a great Christmas with your family. It sounds like you've definitely been going through it with regard to surgery, hopefully it's not all for nothing and you will begin to feel the benefits soon. Take care.
I’m sorry to hear you have to choose either to see or decline in mobility. I do hope the best for you. So from one MS’er to another keep fighting for your Quality of life and do what you think is best for you. Stay strong 💪.
Hey there, good to hear from you .. and thanks for your message. I hope all is well with yourself, I always watch (and enjoy) your videos but don't always comment. Take it easy.
I have floaters too.
NMO positive.
Completely bed bound in nursing home at 34 y.o. Very delayed diagnosis and delayed treatment. A lot of bad doctors gaslighting…
Strangely enough, I am Lyme Disease positive as well (Mayo Clinic positive).
Hey Anson, I've just been over to your channel, subscribed and watched the video you published about 8 months ago, in order to learn a bit about your condition.
I have to be honest, I've never heard of "PENTAD Super Syndrome" but after watching your video I can see how absolutely devastating it is, and has been for you. I'm so terribly sorry this has happened to you. To hear that you are completely bed bound and in a nursing home, and at the very young age of 34 is nothing more than soul destroying.
So you have floaters too, do you think yours are a result of medication side-effects?
As I'm typing this message, my floaters are just everywhere drifting across the words I'm typing on my PC screen. The worrying thing is what's causing them (I suspect medication) and how much worse are they going to get.
So you're NMO Positive also, that's very interesting. Do you think the NMO is mainly responsible for a lot of your disability?
(sorry for all the questions)
I'm not sure how many of my videos you've watch, but three years ago the Dr's changed my MS diagnosis to NMO, but now they're thinking of changing me back to MS.
The Dr's can't seems to give me a concrete diagnosis, but I do appreciate I appear to be a 'challenging' case.
2007 - Transverse Myelitis.
2013 - MS
2019 - NMOSD
Now I'm no longer fitting the NMO criteria because apparently NMO is not progressive and clearly, my condition (whatever it is) is progressing.
What is really difficult to accept is the fact that ten years ago I was pretty much full power, no muscle weakness. But now, I struggle walking to the kitchen, just even to stand takes massive amounts of energy. As I'm quite sure you are no doubt aware, to be stripped of pretty much everything you were able to do in life absolutely crushes you. Like yourself, I've even had to give up my job of 30 years which I loved (computer programming) because of illness.
Interestingly, Lyme disease is often caused by the bite of a tick, the symptoms are very similar to that of MS.
I'm really interested to hear more about you and your condition. I do hope you respond back and we can talk again.
My wife and I are sending healing thoughts,
Take care - Neil & Teresa.
Neil, how about a zoom interview? We're in this #NMOSD fight with you...
Hey there, thank you for the kind offer however, I’m not really up to it at the moment.
@@NeilBradleyMS If you change your mind, please let us know, we're trying to raise awareness about NMOSD in the states....
I was surprised to see you were on Rituximab. Have the approved Soliris or Uplizna in the UK?
Hi Neil. Gosh I haven't commented in quite a while but the eye symptoms in my opinion are for sure related to the steroid medication. I lost the sight in my right eye back in 2018 to Optic neuritis and for 6 weeks after I was taking a ridiculously high dose of prednisolone . Then I took more last year after vision problems in my good eye. Since then Ive now been diagnosed with early signs of cataract in my left eye. I'm only 50 and have read that prednisolone can cause cataracts so be sure to check on that. It was the Ophthalmologist at my eye hospital that picked it up as like you say, they do more thorough testing.
Hi Becky, yes it's been a while hasn't it nevertheless it's always lovely to hear from you. I too reached 50 in September this year, felt a bit surreal! Unfortunately as you are no doubt aware taking steroids long term, has so many detrimental side effects and yes like Cataracts. They start to form as a result of higher sugar levels in the blood caused by the steroids, I've also heard Glaucoma. I do however acknowledge there is a good side to this medication which helps us tremendously. I'm terribly sorry to hear your lost the sight in your right eye due to Optic Neuritis, this must have been (and still is) very distressing for you. Take care.
I am an occupational therapy assistant and I know that if I had to choose I would choose vision. I have seen many paraplegics who live very full happy lives. While many people blind people do too it isnt the same. Low vision is very much a safety concern much different than mobility because with decreased mobility you still have many durable medical equipment and assistive devices that help so much. Well that's just my opinion Im sure there are others who see it differently. Hope you get your health and condition in a much better state. Merry Christmas to you and Teresa.
Thank you Diane for your message, and yes I do understand what your saying.
I've had so much taken away from me physically which I've had to try and get used to, but not sure I ever will. However, I am able to sit reasonably comfortably in front of my Computer which I enjoy and, need my vision for. I also recently built two new computers from scratch, all sight related things. I know for a fact having already lost the ability to do most physical things due to weakness, loosing my sight I think would be pretty much the final nail in my coffin.
Nice to hear from you, and Merry Christmas to you also. I also hope you have a lovely new year. All the best - Neil.
Hey Neil, long time no speak. Good too see you again, type of agree with you , about your miss diagnosis and its your body reference the medication. We have all been there doubting is this safe , do I want to put this drug into my body. As for me I got covid this Christmas, and my MS really played up, to the point I could not walk, or lift my legs to climb stairs. The nhs were really good and sent me some treatment within 24 hours., finally tested negative today. MS and covid are not good together so try and avoid. Wishing you both a happy new year x
Hi there Indie, nice to to talk to you again. Oh my goodness, so you've had Covid, I'm so pleased you've recovered ok. I think with most illnesses that might increase the core body temp, MS will definitely play up as it hinders the conduction of nerve signals due to the Myelin damage on the nerve itself. I've learned, if ever you've got a temp try and keep it down by taking Paracetamol (also known as Tylenol), because it's the increase in core body temperature which makes our symptoms worse. It's called Uhthoff's Phenomenon. Fortunately so far I've managed to avoid Covid, it's a good job really as I'm immunosuppressed so if I caught it I think it would hit me pretty hard. I rarely go far now days, which is probably why I've managed to avoid it.
I hope you had a lovely Christmas, and my wish is you have a Happy New Year. 💕🙏
@@NeilBradleyMS thank Neil for your kind words. I am immune suppressed too , however the NHS really kicked in and sent me some tablets to help fight covid. Happy new year to both of you 💗 x keep up the channel , maybe one day we will all meet up on a zoom call : )
Thanks Indie, and yes a zoom meeting one day would be nice, I would be up for that.
Look into the live disease free program with Pam Bartha. I have MS and have been losing my mobility over the last few years, but have noticed some significant symptom improvement since joining this summer. I’m sure you are like me and many other MS sufferers, you are willing to try anything. Good luck in whatever you decide to do…hugs from Canada!
Thank you Janet, I'm glad this program is working for you. All the best.
Hi my friend! Hi to Teresa. I was wondering if you ever asked your doctor about the walking medication that I am taking, Ampyra/Dalfampridine ER 10mg? If I didn’t have that medication I believe I would be in a wheelchair right now. I’m sorry you are going through so much! Praying for both of you!
Hi Patty, it's nice to hear from you again. I seem to recall I researched the drug you're talking about and unfortunately it's not available on our NHS hear in the UK just yet. I hope you continue to be well on it. Take care - Neil.
Hi Neil, i dont think they have a clue. I am so done with the medical profession.
And they don't care!!!
Hi Nail,
Have you ever tried Choline supplements?
I would say, talk to your doctor and ask if it is safe for you first, and then try it!
Good luck
Hey there, thank you.. I'll have to Google this one as I've not heard of it. Appreciate your thoughts. Best to you.
Prednisolone is an amazingly powerful drug, but it's absolutely miserable as well. I only have to take it one or two weeks a year in very high doses, but even then, they make me go completely manic. That stuff is like a sledgehammer to the system. Extremely effective, not very efficient.
Thank you for your insights on it! (And apologies for all the comments. I'm binge watching your videos today ☺️)
I thank you for binge watching my videos, I take that as a huge complement. You’re absolutely right about Prednisolone, I’m currently weening myself off it (against the dr’s advice) as it’s playing havoc with my vision. The only problem is, the good work the drug is doing which is keeping down inflammation in my spinal cord, is being undone, I’ve documented this in my previous video. But I feel I have to choose, my vision or mobility/pain. I feel what quality of life I have remaining would quickly diminish if my vision was to get so bad I could not see properly. Prednisolone is no. 1 for visual side effects such as cataracts and glaucoma.
I had really bad cough and tye doctor told I have allergy and my immune system is overreacting so he gave me prednisolone injection and I really didn't know what are the sides effects going to be so I got the injection and also had some antibiotics then on 4th day I had pimples rash on my whole back and had bloody stretch marks on my lift hip and I asko got loosing my hair and got eye floters its the worse medicine ever
Neil I know what you mean when you said that they don't know what's wrong with you. Because no medical personnel over my way believes my symptoms of having Scleroderma. I was just with my family doctor for my six month checkup and he told me that I need to forget about having Scleroderma from my head to toes. I should have walked out of my appointment but I was in shock when he said this to me. I truly have Scleroderma inside my brain I had an MRI with and without contrast done to my brain I had a TBI and Concussion as you know back in 2003. Scleroderma can cause a past injury to become like it's hurt again and then what happens is that Scleroderma acts like it's rehealing the injury by making too much collagen in the area of the past injury on someone's body. In my case Scleroderma attacked my brain. I have deep white matter in side parts of my brain that are abnormal which leads me to believe that it's Scleroderma inside my brain and all over inside and out my body. What Scleroderma does is by trying to reheal the injury to my head it makes the body feel hard meaning my skin gets tight all over my body. There is a blood test for Scleroderma called SLC-70 but I have been tested in 2018 and it came back negative then I was retested in 2020 again came back negative. But symptoms can arise even if the blood test is negative which that is in my case. My Nervous system is affected tremendously 24/7 Days a week while it damaging me from the inside out Specially when bad weather and nasty cold is which can be every day. I now switch to another health care provider but I can't see her till the new year to make an appointment which I plan to make in order for my diagnosis of Scleroderma. I need to see a rheumatologist but I need my new doctor to request the appointment to the rheumatologist. I can not make my own appointment. If not it's going to be found too late which may already be. I wish I could help you Neil What made you Medical Care personal think than you MS came back? Could you have both MS & NMO together? And with those floters I know what your talking about
but I have been seeing color dots,lines
ect. Although not much as I used to.
Could they try you on something else for you floters in your eyes? I don't know if their is an oral medication or drops to help with your floters? Have you thought of taking an eye supplement maybe?
Sorry it's long but as you know we have not chatted for a while. I hope you and Teresa and your whole family have a Merry Christmas ⛄
Take care, Amanda & Logan 🎅❤️🎄
Hi Amanda, it's really nice to hear from you.. I hope you and Logan are doing well and have had a nice Christmas. I do understand about your Scleroderma diagnosis and how frustrated you must be, especially with that rude Dr telling you to forget all about it. In my experience, these Dr's DO NOT like us doing our own research now that all the information is readily available on the Internet. Not all Dr's are like that, but some of them.
There no real cure for the floaters, apart from a rather radical and invasive operation which I'm not prepared to go through. I'm confident I can cope with them, I just don't want them getting any worse, and I'm almost sure its the steroids (Prednisolone) which are causing them. Prednisolone no. 1 side effects are all visual with conditions such as Cataracts and Glaucoma.
I've been under the NMO hospital (different to my usual hospital) for some time now and after monitoring me for three years they now feel I don't fit the NMO criteria so have written to my usual hospital requesting me to have more MRI scans. This means MORE appointments!! ho hum.. They basically no long feel I fit the diagnosis of NMO so are thinking of putting me back to MS, but I didn't fit that criteria either. They basically don't know what's wrong with me.
Nice chatting with you, and I wish you and Logan all the best for the coming New Year. Take care.
@@NeilBradleyMS Neil it must be so frustrating for you that you don't fit into having NMO or MS. I wish I could help you trust me I know I am in the same boat. But I and Logan wish you and Teresa have a Happy New Year too!!
Take care ❤️Amanda & Logan
I developed floaters 2 months after a stroke Also things seem bright Which makes the floaters worse very depressing to say the least if we didn't already have enough to deal with god bless thanks
Hey there, thanks for your interesting comment. I’m really sorry to hear you’ve had a stroke, I hope this has not left you with too much disability, and you are recovering well from this. The floaters are such a nuisance, a worry also. Mine seem to be getting worse, but I think it’s side effects to medication causing mine. Good to hear from you.
I came out of a pretty good Neal have The fear of having another is a daily struggle I do the treadmill 4 days a week I learned more online than what doctors can tell you Collateral circulation through exercise Brings new blood vessels And lot with diet have you looked into dr wahls diet she had ms if you have any questions let me know I will pray 🙏 in Jesus name for us 😊
Hi I really need some help , I had an allergic reaction to something that was put in my face and I’ve been taking (30mg steriods) for 3 days and my vision has gone blurry and I’m seeing glowing patches everywhere, I’m really worried and frightend, it’s been a week and I’m still having the vision problem and just putting up with the pain I’m in! 😭 I’ve seen an eye doctor and they’ve said my eyes are fine which makes me even more worried , how long does this take to go away with the vision side effect from prednisone xx
Hi there, I'm sorry to hear you're going through this at the moment, it's sounds very traumatic. Unfortunately the no. 1 side effect for this drug is visual disturbances, as you've no doubt discovered. Isn't it amazing how the Dr's never prepare you for this sort of thing. I'm now off this drug as of Feb 10th thank God, I don't recall exactly when the blurred vision calmed down but I think it was longer than a week, I would say you need to give it a bit more time. You might want to report the side effects to your Dr as well, telling them you've been to the Optician. xx
I meant to also say that thanks to this steroid, I've now got the start of Cataracts at 50!
hi how are you both?
Not doing to bad thanks, I hope you are ok too.
When I had shingles in my eye the Optician couldn't see anything wrong ... I got a Referral to see an Opthamologist at the Hospital & with their expertise & fancy equipment they could see the damage done!
There must be some alternatives for your pain therapy besides Prednisolone.
It was interesting... When you were in the kitchen w/ Teresa, you said about nearly falling over - that made me think about what you were saying about choosing between Mobility or Vision ...
In my mind, if you lose your sight, you'll lose your mobility anyway ... Because unlike a vision-impaired person who would still be able to make their way around their house or garden ...
However, with you, if you can sporadically lose your balance then it probably wouldn't be safe for you to try & move around the house - do you get what I mean? Hope I explained it well enough 🤔
If they feel you fit the criteria now for MS then the usual medications they would use should now be made available to you & hopefully one of those may help reduce your pain?
Love to you both 💖💖
Has been so wonderful to see an update & see both your beautiful faces!!
Hi Susannah, yes agreed! The hospital has much superior equipment in comparison to the Optician. We've also just recently had a bad experience with the Optician whereby Teresa went for an eye exam and they missed the fact she has developed Glaucoma in both eyes, she was in shock when the hospital a few weeks later had spotted it. Our faith in Opticians certainly has diminished in recent years, but I realise we can't tar them all with the same brush.
I do understand what you're saying about mobility and vision, my very big concern is if my vision got so bad I was unable to even see this screen properly (my computer screen) that would probably it for me. The few things left that I can do are visually related, they are my Video Editing, Runescape (an online game I've been playing for 15 years), a bit of TV in the evenings and also a few other things, ohh running this channel etc. Even now I'm fighting to see what I'm typing in-between the floating shadows in my vision, it's driving me crackers. Sometimes I think to myself, somebody up there obviously thinks I've not got enough to cope with so I get given something else. I just don't know.
With regard to the pain, the Prednisolone is actually used for reducing inflammation and not pain. I wish it would work with pain, because I take Morphine for the pain which now unfortunately my body has built up a tolerance to (it's an opioid) but I refuse to increase the dose as I'm already on quite a bit. As I'm sure you're all too aware, you just don't know which way to turn sometimes.
It's been great to hear from you, sending much love and I hope you have a nice Christmas. xx🙏
Hi Neil , see if you can get reffered to see Dr Susan Mollan at Queen Elizabeth Hospital Birmingham ( i had to travel but it was worth it if you are both up to it? She is lovely and hugely knowledgeable, Professor Mollan is a Neuro ophthalmologist & is VERY good.
I get & have had a massive increase in floaters in the past few years, also something called palinopsia ( repeated negative after images if everything I see) all very worrying and disturbing,& other visual problems.
I haven't looked all the way through the video yet Neil,( update..i just have )but just wanted to say despite your problems it's fantastic to see you again, truly👍
Love to you both xx
( I'll carry on watching now, as fir me, still undiagnosed, more problems but struggling to get to see let alone get answers from anyone beyond gp level, apart from Prf Mollan.
Got return of deep aches in my legs & lwr spine,, fasciculations everywhere, heart problems, blood pressure fluctuations, palpitations, triple vessel heart disease ( told its mild) & wierd heart bounding, not racing, episodes that last a couple of hours at a time,heavy head & legs & my heel pads feel like somones hit them with a sledgehammer, & yesterday return of scratchy prickles/ itching randomly all over , nightmare mate.
Wishing you the best for Christmas & the new year .
Hey there, it's great to hear from you again! I know it's been a while but I do recall chatting with you in detail in the past. Thank you for the recommendation but unfortunately I'm unable to travel any distance now really, the furthest I go is my local hospital which is about 12 miles. The stress and anxiety of travelling with all of my health issues is simply too much for me to cope with now.
I'm so terribly sorry to hear you're suffering is a big way, thank you for sharing your symptoms, the frustration of not being diagnosed is horrendous isn't it. As I'm hoping to explain in later video (if I do them) I appear to be a 'challenging' case and it's looking like my diagnosis is going to return to that of MS from NMO (Neuromyelitis Optica).
I hope you too had a good Christmas, and I'd like to wish you all the best for the new year.
@@NeilBradleyMS Christmas has been better than expected so far( I dare'nt tempt fate) & thankyou for your wishes.
Sorry you can't travel I understand the anxiety very well unfortunately.
I hope the re diagnosis of Ms might bring you some better treatment options?
Take care both x
I also started getting eye floaters 10 months ago. I’ve been to so many doctors, and a couple eye doctors and nobody can tell me what’s wrong. They chalk it up to old age (I’m 44) Before the eye floaters happened, I also had red veiny eyes that never responded to allergy drops. Head and eye pressure. The whites of my eyes also hemorrhaged a couple times. My blood pressure was high at the time, but even after getting my blood pressure stable, the floaters have remained. 😔 It’s super discouraging, and I’ve gone down so many rabbit holes trying to figure out what could be causing it. I know stress is a big factor, as well as the liver being overloaded. I take a lot of migraine medication for constant headaches, so I’m trying to detox from medications. But other than that, just hoping it’s nothing more serious that’s being overlooked.
I am sorry you’re dealing with the same thing, but grateful in a sense to know we are not alone and in this together.
I hope you have a beautiful weekend. Best wishes from the USA! ❤
Thank you for your message .. soul destroying aren't they!! I'm 51 years old now and I've been dealing with them since I was a teenager, thinking about it even younger than that. It's only recently they got significantly worse, the newest onset of more floaters happened after receiving some treatment (IV Steroids) at the hospital. But I'm not 100% sure this caused it because I've had this same treatment multiple times over the past 10 years or so and the floater have never changed. Age does play a factor with floaters, but you're definitely not old at only 44. If you want to learn more about them, there is a lot of information on the internet, and on UA-cam as well. One thing I am certain of though, as my video suggests, I do believe my floaters have got much worse since taking Prednisolone (steroids). I'm still taking this drug, however now only 5mg as opposed to 25mg. To be honest I'm feeling much better off it, and I do intend to knock off that remaining 5mg, but every time I do I feel terrible, so it's got to be done very slowly. I'm going to leave you a link to a video and channel called "Doctor Eye Health", this guy really knows what he's talking about. He's got hundreds of videos about the eyes as well as floaters. Take care - Neil .. ua-cam.com/users/liveOqCjxlY_H-A?si=9EPV3BH0TfcvaabG
@@NeilBradleyMS Thank you Neil for your quick response! Eye floaters really are soul destroying. I can’t believe you have dealt with them for so long. I am pretty sure that if you feel like they have gotten worse with the prednisolone, it’s good that you’ve been weaning off it. Good luck with the last 5 mg, take it slow, you’ve got this! Thank you so much for the link to the Doctor Eye Health. I can’t wait to check it out!
Take care,
Kimberly
Hi Kimberly, you are so welcome. Anything eye related I use his channel. My wife Teresa has unfortunately got Glaucoma, but he really explains things in an easy to understand way leaving you not so fearful.
Take care.
@@NeilBradleyMS Thanks again, Neil!
Hiya neil, we have interacted before but it was some time ago. Our symptoms, timeline and treatment seem to be very similar. I have been diagnosed with rapidly evolving relapsing ms rather than nmosd but i am waiting for a blood test for it. I have been on prednisolone for almost 3 years on what i call low dose at 85 mg a day but have had 35 grams of pulsed ( iv ) methylprednisolone. When im on prednisolone i can walk ok and live nearly normal but when im off i can barely get out of bed or move. I also get floaters but this is 100 percent a side effect of the steroids. Id love to have a chat after xmas of you are upto it, sometimes a problem shared is a problem halved 😊 take care mate
Hey Daniel, thank you for your message and sharing your condition and symptoms. I do recall chatting with you some time ago. I started on 40mg of Prednisolone (in 2019) and I considered that to be a high dose, so the 85mg you're on is is quite significant I would say. That said, if it is giving you back some quality of life and you're managing the side effects ok, then good! Like myself, obviously the drug is doing a good job at keeping down inflammation in your Central Nervous System.
I'm interested about your floaters, do you have a lot? All of a sudden I do and I'm finding them very distressing. I'm confident I can cope with what I've got now, but I don't want anymore if I can help it which is why I'm reducing the drug.
Coming down off the Prednisolone is taking it toll, even as I type this message to you both my legs are SCREAMING at me with nerve pain. It's only 07:41 in the morning, I've been up since 6am as pain gets me out of bed. Nobody should have to live like this.
Yes, having a chat with you would be nice, I would definitely like to do this, we can compare notes :) It's true what you say though, a problem shared. I look forward to that, we will have to arrange something.
I wish you well, and hope you have a nice Christmas and new year - Neil.
@@NeilBradleyMS heya neil 😊 i do have alot of floaters in my right eye they drive me crazy ! Ive had alot of steroids at pulsed dose alongside the 80mg a day i think near on 35 grams now and its probably to blame. They do make life more liveable for me but ive been told i have to reduce them due to potential side effects. My neuro has asked me to now have a blood test for nmo as he thinks i more so fit that so it might be why our symptoms and story feel similar. The pain i get coming off steroids is awful your right no one should have to live like it ! The psychological side effects of them are also largely over looked. It would be great to have a proper chat and compare notes 😊 i dont know how to direct message on youtube but if you do ping me your email and il send my number. Have a great christmas neil 😊
Not sure if you do Facebook, but if you do search for me "neil.bradley.1972" and I should pop up. Add me, and then at some point after Christmas we can video call over messenger if you're up for it.
@@NeilBradleyMS heya neil 😊 sounds great! I just added you.
If you have MS, not NMO. Perhaps aggressive MS treatment might provide a little relief.
Never thought B cell targeted therapy did much good.
Tysabri was the only effective treatment. BTK inhibitors are in the works.
They ought to give you access to try what you and Dr think might work.
Hey you laughed.
Very end.
Peace,
Tom OB
Nice to see you x merry Christmas to you both
~~❊💚❊~~
So you are saying prednisone increased your eye floters
I think it did, yes. If you Google the side effects of Prednisolone, its side effects on vision is significant. I’m still on 5mg, but when I was on a higher dose, 25mg my eyes always felt weird and blurry. Also, as a result of Prednisolone, I have got the start of cataracts at 51 years old, this was diagnosed by my optician.
@@NeilBradleyMS I am 27 rn but one year ago I got a corticosteroid shot for seasonal allergy i don't know if it was prednisolone or another but I believe because of that I got eye floaters
@@farzandalikhan5933 Floaters are very common, it's not necessarily the shot that did it. For me, I had high dose steroids infusion over three days at around the time I noticed increased floaters. I certainly feel in my case that is what did it. Steroid have significant side effects on the eyes. Google it. Thanks.