Just saw this update few years old I feel so much for you going through these things and hope it gets better in coming months Neil Man you are one tough bloke for trrue !! Im now seriously sending prayers for you feeling better asap with hugs and heaps of 💕
Hi Neil, I hope you’re sleeping right now! I could just nod my head yes to so much you were saying. I get the buzzing feeling you are talking about almost constantly in my neck and right hip/leg. It is maddening! Yeesh, I feel your pain Neil. I hope you feel better🐶
Hi Lynn, I had reasonable sleep thanks. Still waking with pain and my leg jerking, but better than the previous night. It’s 7:15am UK time and I’ve not long awoke. My whole lower body is buzzing, hate it.
Good morning Neil et al. Let's take the better option. Even though they're are many of us sending our support/sympathy. It's not enough!!! Its all about you. And the meaning of life and what makes you content. Go after that!!!!!
Hi Neil,it's almost 1a.m. here and sending prayers your way that you get some painless sleep in. We have a terrible disease all these doctors now do not want to treat pain. Some neurologists really feel pain is not apart of MS. Share my body for a week I say!!
I'm with you my friend, I had a rough night myself. It's 625 am in the states and my leg pain kept me up all night. Started to feel a little better about a half hour ago and thought about trying to get some sleep and then my six year old grand daughter came into my room and asked me to make her pancakes. So that was that and it's going to be a long day. I always enjoy your videos Neil and together we the MS community will find a way. I have to believe that because I need to be here a bit longer to spend time with my grand babies, they are all I have now and they bring great joy, although they are a handful. Try to get some rest if you can and I look forward to hearing from you both.
My heart goes out to you Neil, I do hope they hurry up and start some sort of treatment. I feel inpatient for you. You are a very strong person. Take care my friend, we’re all here for you.
dear Neil, so sorry to hear that you are in such bad pain again! Sleep is the most important thing for us to regain strength for the next day! Keep chasing up with your MS nurse! That is what she is here for! as long as you do not have the results back from the professors team you are still a multiple sclerosis patient! And your pain needs to be eased! You need to sleep! desperately! I can understand how you feel. I have had a terrible night and today wasn't much better and I was in bed for literally the whole day. Advocate for your health. It is the only thing you can do! Crossing my fingers for a good outcome! my best regards to Teresa and you! Britta
Hi Mate So sorry to hear about your pains and having such a small amount of sleep. Having such a small amount of sleep is just awful and I'm lucky enough that my tablets completely knock me out. Hope you get a good night's sleep soon. Take care.
Morning Neil, I am so sorry you are in such pain, apart from the pain, sleep deprivation is quite depressing. I too woke early at 4.22, stange how precisely the time matters! I have shifted my daily schedule to fit my waking hours, which if fine now but when I return to work it will not be fine. Take care Neil, please say hi to Teresa and enjoy your tv programme. I think it's time for another cup of tea!
Yeah anytime of the day or night if you need to talk to us no need to check if we're available, just let yourself in. The front door is never locked. Hope you will get some rest soon. Until next time.
Try and see if you can get the Dr to prescribe Mirtazapine Neil ? It’s an antidepressant but it also aids sleep brilliantly. With all my health issues I couldn’t sleep and was suffering. It really really helps. Plus helps with the depression coping with a chronic illness . Sure it would REALLY help you . X
Neil Bradley Yes it’s worth a chat to him see if it’s suitable for you as honestly it really does help . I just had my lip biopsy and am now officially diagnosed with Sjögren’s disease . It’s only taken two years! They said it was fibromyalgia but I knew it wasn’t *just* that because my symptoms had changed so much. You have to keep pushing or you never get answers. Starting treatment next week . Hope you get a definitive diagnosis and treatment soon! Love to Mrs B 😘 x
Hi Neil, I’m sorry you are suffering so much. I would ring the professors secretary and chase up the letter. I work in the NHS and I can tell you the people that chase things up usually get quicker results. I’m the same as you, worse at night sleep 3-4 hours, pain in legs wakes me. I’m not sure what I’ll do when I have to go back to work. Have also now lost lower quadrant visual field but hope that will come back. Anyway this isn’t about me! Sorry but just to say your videos have helped me immensely and I wish you all the very best. X
Hi Carole, I’m afraid I disagree .. this is as much about you as it is me💞 We are all in this together. The pain takes over doesn’t it, then it clouds our ability to think clearly and function. There are so MANY things I want to do, my mind literally never stops. But all I can do is sit here. I so hope your vision corrects itself Carole. Hang in there. xx
Carole Venthem Hi Carole, they tested my blood for this back in Feb when I had a Lumbar Puncture and it came back clear. My MS nurse said it’s still possible to have a clear blood test and have NMO. She’s chasing up the results of another NMO blood test in which the results have gone astray.
Neil Bradley oh no! That’s very frustrating. Ever since you said that’s what you have I’ve been researching it, it’s all very interesting. The nervous system is so complicated though. I meant to ask, how did you get on with the magnesium?
Neil, treatment only tries to prevent future attacks and/or slow progression. At least that’s what my dr at TISCH says. The others are the ones you mentioned....symptoms wise. I hope you get answers....can feel your frustration. Is there anything you enjoy doing? Find something that brings you joy. This is for life so we have to find a way to keep going in pain unfortunately.
Hi Karen, yes indeed. I have things I enjoy doing. I get frustrated though as I want to do so much more but cannot. I’m trying to accept it, but it’s hard.
Hi, I'm sorry you are not able to feel refreshed and rested as needed. Hopefully you will get a new opportunity, an open door to help you manage this. PS Today's my 1st Year Anniversary after being diagnosed, I'm mix of emotions and memories.
Hey Jay, thanks for the message. I can totally understand the mixed emotions. It’s six years since being diagnosed with MS for me, but I’ve been having symptoms for 12 years. And now, I’m in the process of being re diagnosed because now they don’t think I have MS. What sort of symptoms are you dealing with?
@@NeilBradleyMS Hi. I had a flare MRI in March but it wasn't discussed until a few days ago. I was told I had more lesions. Since it is now August it is probable that I could have more lesions than found in March. My latest symptoms are scary: left sided numbness, including half my face and mouth, left leg pain (causes gait but the pain is too severe to walk so I just wait it out by sitting down and elevating the leg - sleep is more of a negotiation when this happens), headaches and migraines (which are more evident on the left side of my head and forehead), weak hands, fuzzy left eye vision and pain behind said eye, heart palpitations, chest pressure and abdominal pain after eating, constipation and continual unexplained weight loss. I was taken twice to the hospital where doctors thought I was experiencing a stroke. After tests were done, including a CT Scan, I was told I could go home. They couldn't find the cause. ( 2 weeks later, as in a few days ago, my Neurologist said I had experienced a nasty and lengthy flare caused by having more lesions in the same area) Significant amount of brain lesions were found in my Right Hemisphere, which corresponds to the concentration of symptoms on the left side of my body. I knew it for years, yet it wasn't taken into account until now. We keep on fighting. Sending you and Theresa my best.
Jay DC Thank you for sharing that Jay. Wow, you have a LOT to deal with, and I’m so very sorry about this. It’s good the hospital have found the cause for all these issues and hopefully you’ve been receiving some treatment for it. Hang in there Jay, like you say we have to keep on fighting. 🙏
Neil, I take and alternate a Mersyndol Forte or Panadeine Forte (30mgs codeine each tab) and they knock me out. Or a sleeping tab. Will your GP prescribe something for you? I wouldn’t take the nerve meds. Stay strong mate. Sending sleeping vibes. Have a nana nap today. 💖
Hi there, I sometimes take Diazepam at night.. which help me sleep (have to be careful as they’re addictive). They also help with the jerky leg spasms. I’ve got Codeine as well which I take in the day. The pain at night can be very intense bringing me out of sleep easily. Fortunately I was ok last night but if the problem persists I’ll have to speak to my Doc about it. Thanks. 👍
Morning Neil , please chase things up with your ms nurse , that’s what they’re there for . My understanding is that you’re waiting for the letter from the professor and also that you’re waiting for the appointment bookings to come through for these other tests that you need . Your ms team, especially your neurologist would have the ability to contact the professor’s department. Keep chasing, that’s what I would do. I hope you manage to catch up on your sleep 😴. Take care , Grace .
Neil, I know what you mean, I had 2 full days of no sleep last wk I was like a zombie I was dropping things, seeing things and I get this at some point every wk until I'm passing out infront of people and then I'll go to sleep in the afternoon and sleep for about 16hrs straight and nobody can wake me up, I've been this way for about 3/4yrs I hate it ,I even had sleeping pills from my doctor and they didnt work I was wide awake, still had the spasms/cramps through my legs and feet so I have to keep them moving and get up and walk around all night it's so tiring. I've managed 3hrs sleep tonight but I had to take a dose of cocodamol, Pregabalin and ibuprofen to get that and now my bladder is playing up! Do we ever get a good day? No it's very rare, I cant remember the last time I felt normal with a good day. Your not alone hun we all know how you feel, I really hope things pickup for you, for all of us, people dont realise how pain/fatigue effects us, we fight against our own body's every day and it affects our personalities too cos were fedup and tired permanently. Hope you feel better soon Neil, love to Teresa xxxxxx😘😘
We in this boat together aren’t we Sue. Something worth mentioning, when I was in a higher dose of Pregabalin (about 225mg+) my bladder played up!! Just something to look out for. Xxx
Everything is worse at night I think because we have no distractions. Have you tried staying in bed and falling asleep listening to an audio book? Although I had the best sleep last week staying up all night and falling asleep on the sofa watching Kirsty Allsopp crafting! Never mind taking life one day at a time, one hour at a time is enough. Hugs x
Hi Anna, yes it is more like one hour at a time. As a rule, when I first go to bed I can get to sleep quite quickly. I usually watch UA-cam for a while on my iPad which makes me sleepy. The problem is staying asleep, the pain is so intense it brings me out. Then I can’t get back to sleep until the pain has calmed down. Sleep comes again, but then so does the pain. Can’t win. Fortunately not every night is as bad. Last night wasn’t too bad. x
Thank you Anna .. the next night wasn’t so bad as I took a Diazepam which help with the leg spasms, but they also help me sleep. However last night not so good again, after going to bed at 10:30pm and falling asleep pretty much straight away, the usual pain woke me an hour later. I got up, and didn’t return to bed until 1am. How’s things with yourself? x
Neil Bradley it’s hard isn’t it. I’ve started giving up on sleep at about 4 and going downstairs and doing or watching something, it’s better than lying there so frustrated that I can’t sleep! Have a good night, I hope the diazepam works it’s magic tonight x
Anna Hotchkiss Yes indeed, the frustration of trying to sleep when in pain is just terrible. Thing is, I’m actually really tired and I want to go to sleep but my body is stopping me. Similar to yourself, getting up for me in the middle of the night is becoming a regular thing. xx
Hope you get some relief from this torture. Please shout out to the MS nurse again, you cant suffer like this. This everlasting waiting for a word from some official is like waiting for Godot
Hi Frances, I emailed my MS nurse at the beginning of August. Usually she responds quickly, but this time I’ve heard nothing. I feel like I’m bugging them, but I’m thinking about dropping them a call again next week. The waiting, whilst continuing to get worse and worse is just the worse thing ever.
Hi Michelle, my apologies for the late response.. as well as not feel good it's been mine and Teresa's birthdays (9th & 10th Sep) which is always a bit of a hectic time. In answer to your question, I'm afraid the news isn't good .. my recent steroid infusion hasn't really worked like it has done in the past. I just seem to be spiraling downwards with much worsening pain and mobility. I often don't know what to do with myself, pain killers don't seem to do anything now as I have no doubt my body has built up a tolerance. But I'm not prepared to take anymore. Even now my legs just feel like they're wrapped in cling film being SQUEEZED to death, add into the mix weakness and burning pain. So I'm just not really sure what to do with myself. Because of medication side effects, I feel now my eyes are beginning to suffer, not only with blurred vision but increased floaters now as well. I'm fed up it all. I hope things aren't too bad with yourself. Take care - Neil.
Dear Neil. I feel you, I am really sorry hearing your story unfolding in your videos. I myself have painful nerve problems caused by diabetes and by the too agressive treatment I got. I've experienced releive by changing my diet to Kempner's rice diet, from the very first day. This diet gives your kidneys and liver a really good rest, holyday time so to say. I can sleep from the first night on this diet. Probably its effectivenes is coming from its low hystamine, protein and salt content, meanwhile it gives you a lot of clean energy, which is particularly essential to hungering ms brain cells. Can I contact you somehow, I am afraid I have Ms too, I mentioned it to my neurologist, your symptoms are similar to mine.
Hi Mihály, thank you for your message. I’m very pleased to hear the diet you have found is having positive results with your MS symptoms. It’s all about finding something that works well for you isn’t it. Please be aware though there are lots of people on UA-cam claiming to have the ultimate diet to cure MS. These diets will help you feel better, and detox your body which will do you the power of good BUT there is no cure for MS!. The people putting up these videos quite often just want hits in their videos. Please just be careful. 🙏
Neil, yes it sounds like a good time to take those pain killers. You need sleep for sure. Like you say, it's a trade-off with mobility at least for the time being while the medical staff can get all your medical facts together. Is the blood work you mentioned before, have they let you know it has come back? Maybe you can ask your MS nurse to check on it for you with the professor. Good luck, Neil and hope you can take a nap at least.
Thank you Sheri. Nobody has let me know anything, I’m going to have to chase them. Need some strength and Will from somewhere. I went back to bed at 5am as I felt the pain calmed a bit, only to wake at 6:30am in the same pain again. So I got up permanently.
@@NeilBradleyMS Im up all night sleep mabe 2 hours in the morning try 2 benadryl at night it helps with pain it doesnt knock me out lol but it may help you sleep
Hey Neil, have you tried raising your legs whilst sleeping???? Also I suffer with pain in my legs nearly all the time and energy drinks take my pain away. If I'm driving for a long time I get really bad pain after about 40 minutes and sipping at a Monster drink really helps.
I'm feeling that pain right now. It is unbearable. Tried Gabapentin which disagreed with me. Now they want me to try Pregabalin. Like you I find that the drugs that knock out the pain make me weaker and more wobbly. Hoping they will come up with something better for all of us.
I've given up fighting the sleep problems. If it isn't the MS/menopause then the fricken seagulls start screaming outside my bedroom window at 4 in the morning ! I tend to sit up in bed and watch youtube or tv or do a spot of knitting until I fall asleep again. If its past 5am then I get up. Have you tried propping yourself more upright in bed Neil?
Hi Becky, I do something similar. I put my knees up which relieves my back and I watch UA-cam as well on my iPad. Thing is I’m tired and can’t stay awake, but as soon as I lay down again the pain returns after a short while. I’m a very light sleeper, you can keep your seaguls😊 I can’t seem to sleep propped up. x
Such a painful desease. I'm wondering if a cool bath on your legs help any at all. Do you think maybe a temperpedic mattress help. Wish I could think of something to help you
Thank you Sondra, I’ve tried everything with the burning legs. Nothing works. I don’t find my bed I uncomfortable, it’s fairly new and has a lovely comfy mattress. It’s just this knackered body of mine. I went back to bed at 5am as I felt my pain had calmed a bit, managed to drop off to sleep only to wake again at 6:30am in the same pain again. I gave up, and got up permanently.
@@NeilBradleyMS, Not to contribute to your delinquency, but have you tried weed? (I haven't done so myself, but it comes recommended to me all the time.)
@@NeilBradleyMS I'm so sorry for your pain. As miserable as you are with the pain it sounds like steroids may be your best hope. If it was me I would pester the daylights out of your nurse until she gave me the steroids. I'm thinking and praying for you and Teresa during your difficulty.
Neil, what are your thoughts of the drug called ocrevus. It's been getting some attention and I thought about mentioning it to my doctor. I never know what to believe when it comes to knew drugs and you seem to have broad knowledge on the subject.
Hi Matthew, I was actually scheduled to start on Ocrevus just as soon as I’d had my MS diagnosis reconfirmed by seeing a Professor for a 2nd opinion (July 10th). However, it would seem my MS diagnosis is in question now so I don’t think I’ll be going on it now. I’d done my research, and I’ve also watched videos of people who have been on it. They say it’s good, some say it’s improved their mobility. This basically sold it to me. I was also ok with the side effects too. I recommend you search UA-cam and have a listen to what they’ve got to say. It’s definitely one of the best Disease Modifying Therapies.
@@NeilBradleyMS Thank you so much Neil. I hope they can figure out whats causing your condition. Your symptoms so much mirror my own and it's hard to believe we can share so much clinical symptoms but have a different diagnosis. I wish both of you much happiness and just know this, that you are loved by many people for all you share and I'm personally inspired by your resilience.
What if you did something my brother did at a hospital er. He if not assisted told them he would collapse in the floor. they helped him. but he would have he was in agony. you may have to do it. sleep deprivation is horrible for Ms.
I've on a previous post of yours you was thinking about DMT plegridy. Do you still have that?or did you not do it. Im on it but to be honest its makes me feel crap.
Hi Michelle, no I never went on it. I think most of these type of drugs will make you feel crappy to be honest, especially when you’ve first taken them.
Hi Just seen your latest blog and I get it. It goes on and on. I'm rrms but I don't seem to be getting a good day at all.sleep is horrendous. It's the back thing that really is getting to me.ive just got out the bath laying on the bed and my back hurts like hell. It feels like it happening fast for me but I'll wait to see the neurologist with the mri results. Hope you get a better night x
Michelle Mountier Hey Michelle, oh yes the back pain is horrendous and know that I do understand. For me the muscles either side of my spine feel frozen and stiff. It doesn’t matter what I do, or how many exercises and stretches I do. NOTHING relieves it. Take care. 🙏
Hi Tom, thanks for checking in on me. No improvement with me at all, I’m just trying to cope hour by hour with very poor mobility and pain. When you consider only as little as eight years ago I was walking several miles a day (hobby), as I loved being outdoors. Teresa and I had also not long purchase our forever home (where we live now) and I was doing all sorts of DIY jobs on the house. The point I’m making is I was at full power and strength, which has ALL GONE in eight years. It’s very depressing that I can barely do anything now, and it’s very frightening how quickly whatever is wrong with me has progressed. Hour by hour my friend. How are you doing Tom?
Neil can you legally use CBD oil? Things are worse at night because there is less to distract us. CBD oil helps my spasms and a lot of the pain I get (and I get plenty). I get the buzz as well. It can go from my ankles clear up to my chin at times. It can be a fine, light buzz or a heavy deep throbbing buzz. Drives me nuts. I hope you can get some help.
Hi .. yes I’ve tried CBD, several different strengths. Spent a lot of money on it as well. I heard it’s good for spasms and pain, sadly I didn’t notice anything though.
@@NeilBradleyMS Oh that is awful! My doctor wanted to give me gabapentin but I'm the single parent of a handicapped son and I cannot afford to be slowed down like that.
Me too, my knees give way and so does my back. Slowly I start getting lower and lower. I have to straighten up holding on, then it just repeats until I go and sit down.
Michelle Mountier Hi Michelle, not so good. Mobility the worst it’s ever been. I feel like the hospital is ignoring me, I email last week now and I’ve still not had a reply. Sleep is still rubbish to be honest. How’s you?
I've not been so good today.jab day. My back ,calves and hip hurt and are making me walk strange.i also have head pain.not headache as such. I cant believe your not getting any help! Where do u live ?I'm in harlow essex and so far my ms nurse really nice but takes about 3 days to reply. My neurologist is lovely also Dr sharmelee gnanapavan. Keep fighting and keep ringing them all
Michelle Mountier Sorry to hear things aren’t good with you at the moment. My MS nurse would always respond to me in about three days also, but not recently. I feel like I’m annoying them, but I’m always very polite when I make contact. Not sure what else to do. I emailed last time, next week I’m going to ring. I’m in Derbyshire. Pleased you’ve got a nice Neuro, mine is ok.
Thanks Susannah, I’m in the process of chasing it this last couple of weeks. But the Professor is away in America at the moment, so I’m getting nowhere fast.
@@NeilBradleyMS gosh that isn't very good. I've seen/read that people have gone to the Hospital and then received treatment, is that something you could try when you're in pain, etc?
Susannah U I once kind of complained about having to wait to long, it was then they suggested I go to A&E and get admitted. Being admitted to hospital is something I want to avoid at all costs. I can’t even sleep comfortably in my own bed, never mind about a hospital one with everybody around watching. So I don’t feel it’s an option.
Michelle Mountier Nerve pain killer such as Gabapentin, Pregabalin and amitriptyline worsen my mobility even more. They turn me literally into jelly which is why I don’t take them. Double edge sword I know.
Just saw this update few years old
I feel so much for you going through these things and hope it gets better in coming months Neil
Man you are one tough bloke for trrue !!
Im now seriously sending prayers for you feeling better asap with hugs and heaps of 💕
Thank you 🙏💕
Hi Neil, I hope you’re sleeping right now! I could just nod my head yes to so much you were saying. I get the buzzing feeling you are talking about almost constantly in my neck and right hip/leg. It is maddening! Yeesh, I feel your pain Neil. I hope you feel better🐶
Hi Lynn, I had reasonable sleep thanks. Still waking with pain and my leg jerking, but better than the previous night. It’s 7:15am UK time and I’ve not long awoke. My whole lower body is buzzing, hate it.
Good morning Neil et al. Let's take the better option. Even though they're are many of us sending our support/sympathy. It's not enough!!! Its all about you. And the meaning of life and what makes you content. Go after that!!!!!
God Bless you Neil. I have MS also and go threw a lot of the same things.
Hi Duane, I’m sorry to hear this. Know that you’re not alone with your struggles with this horrible disease. Here if ever you need to chat.
Hi Neil,it's almost 1a.m. here and sending prayers your way that you get some painless sleep in. We have a terrible disease all these doctors now do not want to treat pain. Some neurologists really feel pain is not apart of MS. Share my body for a week I say!!
I'm with you my friend, I had a rough night myself. It's 625 am in the states and my leg pain kept me up all night. Started to feel a little better about a half hour ago and thought about trying to get some sleep and then my six year old grand daughter came into my room and asked me to make her pancakes. So that was that and it's going to be a long day. I always enjoy your videos Neil and together we the MS community will find a way. I have to believe that because I need to be here a bit longer to spend time with my grand babies, they are all I have now and they bring great joy, although they are a handful. Try to get some rest if you can and I look forward to hearing from you both.
You're a strong person. Most wouldn't cope
I hope you get a better sleep tonight. God bless.
Thank you 🙏
My heart goes out to you Neil, I do hope they hurry up and start some sort of treatment. I feel inpatient for you. You are a very strong person. Take care my friend, we’re all here for you.
dear Neil, so sorry to hear that you are in such bad pain again!
Sleep is the most important thing for us to regain strength for the next day!
Keep chasing up with your MS nurse! That is what she is here for!
as long as you do not have the results back from the professors team you are still a multiple sclerosis patient!
And your pain needs to be eased! You need to sleep! desperately!
I can understand how you feel. I have had a terrible night and today wasn't much better and I was in bed for literally the whole day.
Advocate for your health. It is the only thing you can do!
Crossing my fingers for a good outcome!
my best regards to Teresa and you! Britta
Hi Mate
So sorry to hear about your pains and having such a small amount of sleep. Having such a small amount of sleep is just awful and I'm lucky enough that my tablets completely knock me out. Hope you get a good night's sleep soon.
Take care.
Morning Neil, I am so sorry you are in such pain, apart from the pain, sleep deprivation is quite depressing. I too woke early at 4.22, stange how precisely the time matters! I have shifted my daily schedule to fit my waking hours, which if fine now but when I return to work it will not be fine.
Take care Neil, please say hi to Teresa and enjoy your tv programme. I think it's time for another cup of tea!
Yeah anytime of the day or night if you need to talk to us no need to check if we're available, just let yourself in. The front door is never locked. Hope you will get some rest soon. Until next time.
Try and see if you can get the Dr to prescribe Mirtazapine Neil ? It’s an antidepressant but it also aids sleep brilliantly. With all my health issues I couldn’t sleep and was suffering. It really really helps. Plus helps with the depression coping with a chronic illness .
Sure it would REALLY help you .
X
Thank you Angie, if things don’t improve I’m going to make an appointment with him and tell him I can’t sleep for the pain. x
Neil Bradley Yes it’s worth a chat to him see if it’s suitable for you as honestly it really does help .
I just had my lip biopsy and am now officially diagnosed with Sjögren’s disease . It’s only taken two years! They said it was fibromyalgia but I knew it wasn’t *just* that because my symptoms had changed so much. You have to keep pushing or you never get answers. Starting treatment next week .
Hope you get a definitive diagnosis and treatment soon!
Love to Mrs B 😘 x
Just grab some 😴 when you can. Stay strong!! x
Hi Neil, I’m sorry you are suffering so much. I would ring the professors secretary and chase up the letter. I work in the NHS and I can tell you the people that chase things up usually get quicker results. I’m the same as you, worse at night sleep 3-4 hours, pain in legs wakes me. I’m not sure what I’ll do when I have to go back to work. Have also now lost lower quadrant visual field but hope that will come back. Anyway this isn’t about me! Sorry but just to say your videos have helped me immensely and I wish you all the very best. X
Hi Carole, I’m afraid I disagree .. this is as much about you as it is me💞 We are all in this together. The pain takes over doesn’t it, then it clouds our ability to think clearly and function. There are so MANY things I want to do, my mind literally never stops. But all I can do is sit here. I so hope your vision corrects itself Carole. Hang in there. xx
I also meant to say that I’ve just chased my ms nurse whom will hopefully chase the Prof and some blood test results.
Hi Neil, have you had the blood test for NMO antibody?
Carole Venthem Hi Carole, they tested my blood for this back in Feb when I had a Lumbar Puncture and it came back clear. My MS nurse said it’s still possible to have a clear blood test and have NMO. She’s chasing up the results of another NMO blood test in which the results have gone astray.
Neil Bradley oh no! That’s very frustrating. Ever since you said that’s what you have I’ve been researching it, it’s all very interesting. The nervous system is so complicated though. I meant to ask, how did you get on with the magnesium?
Neil, treatment only tries to prevent future attacks and/or slow progression. At least that’s what my dr at TISCH says. The others are the ones you mentioned....symptoms wise. I hope you get answers....can feel your frustration. Is there anything you enjoy doing? Find something that brings you joy. This is for life so we have to find a way to keep going in pain unfortunately.
Hi Karen, yes indeed. I have things I enjoy doing. I get frustrated though as I want to do so much more but cannot. I’m trying to accept it, but it’s hard.
Hang in there. Do what you have to to get help.
Hi, I'm sorry you are not able to feel refreshed and rested as needed. Hopefully you will get a new opportunity, an open door to help you manage this.
PS Today's my 1st Year Anniversary after being diagnosed, I'm mix of emotions and memories.
Hey Jay, thanks for the message. I can totally understand the mixed emotions. It’s six years since being diagnosed with MS for me, but I’ve been having symptoms for 12 years. And now, I’m in the process of being re diagnosed because now they don’t think I have MS. What sort of symptoms are you dealing with?
@@NeilBradleyMS Hi. I had a flare MRI in March but it wasn't discussed until a few days ago. I was told I had more lesions. Since it is now August it is probable that I could have more lesions than found in March. My latest symptoms are scary: left sided numbness, including half my face and mouth, left leg pain (causes gait but the pain is too severe to walk so I just wait it out by sitting down and elevating the leg - sleep is more of a negotiation when this happens), headaches and migraines (which are more evident on the left side of my head and forehead), weak hands, fuzzy left eye vision and pain behind said eye, heart palpitations, chest pressure and abdominal pain after eating, constipation and continual unexplained weight loss. I was taken twice to the hospital where doctors thought I was experiencing a stroke. After tests were done, including a CT Scan, I was told I could go home. They couldn't find the cause. ( 2 weeks later, as in a few days ago, my Neurologist said I had experienced a nasty and lengthy flare caused by having more lesions in the same area)
Significant amount of brain lesions were found in my Right Hemisphere, which corresponds to the concentration of symptoms on the left side of my body. I knew it for years, yet it wasn't taken into account until now.
We keep on fighting.
Sending you and Theresa my best.
Jay DC Thank you for sharing that Jay. Wow, you have a LOT to deal with, and I’m so very sorry about this. It’s good the hospital have found the cause for all these issues and hopefully you’ve been receiving some treatment for it. Hang in there Jay, like you say we have to keep on fighting. 🙏
Neil, I take and alternate a Mersyndol Forte or Panadeine Forte (30mgs codeine each tab) and they knock me out. Or a sleeping tab. Will your GP prescribe something for you? I wouldn’t take the nerve meds. Stay strong mate. Sending sleeping vibes. Have a nana nap today. 💖
Hi there, I sometimes take Diazepam at night.. which help me sleep (have to be careful as they’re addictive). They also help with the jerky leg spasms. I’ve got Codeine as well which I take in the day. The pain at night can be very intense bringing me out of sleep easily. Fortunately I was ok last night but if the problem persists I’ll have to speak to my Doc about it. Thanks. 👍
Morning Neil , please chase things up with your ms nurse , that’s what they’re there for . My understanding is that you’re waiting for the letter from the professor and also that you’re waiting for the appointment bookings to come through for these other tests that you need . Your ms team, especially your neurologist would have the ability to contact the professor’s department. Keep chasing, that’s what I would do. I hope you manage to catch up on your sleep 😴. Take care , Grace .
Neil, I know what you mean, I had 2 full days of no sleep last wk I was like a zombie I was dropping things, seeing things and I get this at some point every wk until I'm passing out infront of people and then I'll go to sleep in the afternoon and sleep for about 16hrs straight and nobody can wake me up, I've been this way for about 3/4yrs I hate it ,I even had sleeping pills from my doctor and they didnt work I was wide awake, still had the spasms/cramps through my legs and feet so I have to keep them moving and get up and walk around all night it's so tiring.
I've managed 3hrs sleep tonight but I had to take a dose of cocodamol, Pregabalin and ibuprofen to get that and now my bladder is playing up!
Do we ever get a good day? No it's very rare, I cant remember the last time I felt normal with a good day.
Your not alone hun we all know how you feel, I really hope things pickup for you, for all of us, people dont realise how pain/fatigue effects us, we fight against our own body's every day and it affects our personalities too cos were fedup and tired permanently.
Hope you feel better soon Neil, love to Teresa xxxxxx😘😘
We in this boat together aren’t we Sue. Something worth mentioning, when I was in a higher dose of Pregabalin (about 225mg+) my bladder played up!! Just something to look out for. Xxx
Everything is worse at night I think because we have no distractions. Have you tried staying in bed and falling asleep listening to an audio book? Although I had the best sleep last week staying up all night and falling asleep on the sofa watching Kirsty Allsopp crafting! Never mind taking life one day at a time, one hour at a time is enough. Hugs x
Hi Anna, yes it is more like one hour at a time. As a rule, when I first go to bed I can get to sleep quite quickly. I usually watch UA-cam for a while on my iPad which makes me sleepy. The problem is staying asleep, the pain is so intense it brings me out. Then I can’t get back to sleep until the pain has calmed down. Sleep comes again, but then so does the pain. Can’t win. Fortunately not every night is as bad. Last night wasn’t too bad. x
Neil Bradley How was last night?
I’m sorry life is so difficult and painful x
Thank you Anna .. the next night wasn’t so bad as I took a Diazepam which help with the leg spasms, but they also help me sleep. However last night not so good again, after going to bed at 10:30pm and falling asleep pretty much straight away, the usual pain woke me an hour later. I got up, and didn’t return to bed until 1am.
How’s things with yourself? x
Neil Bradley it’s hard isn’t it. I’ve started giving up on sleep at about 4 and going downstairs and doing or watching something, it’s better than lying there so frustrated that I can’t sleep!
Have a good night, I hope the diazepam works it’s magic tonight x
Anna Hotchkiss Yes indeed, the frustration of trying to sleep when in pain is just terrible. Thing is, I’m actually really tired and I want to go to sleep but my body is stopping me. Similar to yourself, getting up for me in the middle of the night is becoming a regular thing. xx
Hope you get some relief from this torture. Please shout out to the MS nurse again, you cant suffer like this. This everlasting waiting for a word from some official is like waiting for Godot
Hi Frances, I emailed my MS nurse at the beginning of August. Usually she responds quickly, but this time I’ve heard nothing. I feel like I’m bugging them, but I’m thinking about dropping them a call again next week. The waiting, whilst continuing to get worse and worse is just the worse thing ever.
Hope you and your wife is doing okay 🙂
How are you doing Neil?
Hi Michelle, my apologies for the late response.. as well as not feel good it's been mine and Teresa's birthdays (9th & 10th Sep) which is always a bit of a hectic time.
In answer to your question, I'm afraid the news isn't good .. my recent steroid infusion hasn't really worked like it has done in the past. I just seem to be spiraling downwards with much worsening pain and mobility. I often don't know what to do with myself, pain killers don't seem to do anything now as I have no doubt my body has built up a tolerance. But I'm not prepared to take anymore. Even now my legs just feel like they're wrapped in cling film being SQUEEZED to death, add into the mix weakness and burning pain. So I'm just not really sure what to do with myself. Because of medication side effects, I feel now my eyes are beginning to suffer, not only with blurred vision but increased floaters now as well. I'm fed up it all.
I hope things aren't too bad with yourself.
Take care - Neil.
Dear Neil. I feel you, I am really sorry hearing your story unfolding in your videos. I myself have painful nerve problems caused by diabetes and by the too agressive treatment I got. I've experienced releive by changing my diet to Kempner's rice diet, from the very first day. This diet gives your kidneys and liver a really good rest, holyday time so to say. I can sleep from the first night on this diet. Probably its effectivenes is coming from its low hystamine, protein and salt content, meanwhile it gives you a lot of clean energy, which is particularly essential to hungering ms brain cells. Can I contact you somehow, I am afraid I have Ms too, I mentioned it to my neurologist, your symptoms are similar to mine.
Just found ua-cam.com/video/kZ5NGLM1k90/v-deo.html
Hi Mihály, thank you for your message. I’m very pleased to hear the diet you have found is having positive results with your MS symptoms. It’s all about finding something that works well for you isn’t it.
Please be aware though there are lots of people on UA-cam claiming to have the ultimate diet to cure MS. These diets will help you feel better, and detox your body which will do you the power of good BUT there is no cure for MS!.
The people putting up these videos quite often just want hits in their videos. Please just be careful. 🙏
Neil, yes it sounds like a good time to take those pain killers. You need sleep for sure. Like you say, it's a trade-off with mobility at least for the time being while the medical staff can get all your medical facts together. Is the blood work you mentioned before, have they let you know it has come back? Maybe you can ask your MS nurse to check on it for you with the professor. Good luck, Neil and hope you can take a nap at least.
Thank you Sheri. Nobody has let me know anything, I’m going to have to chase them. Need some strength and Will from somewhere. I went back to bed at 5am as I felt the pain calmed a bit, only to wake at 6:30am in the same pain again. So I got up permanently.
@@NeilBradleyMS Im up all night sleep mabe 2 hours in the morning try 2 benadryl at night it helps with pain it doesnt knock me out lol but it may help you sleep
Sending best wishes over 🤗
Hey Neil, have you tried raising your legs whilst sleeping???? Also I suffer with pain in my legs nearly all the time and energy drinks take my pain away. If I'm driving for a long time I get really bad pain after about 40 minutes and sipping at a Monster drink really helps.
Tried everything mate.
I'm feeling that pain right now. It is unbearable. Tried Gabapentin which disagreed with me. Now they want me to try Pregabalin. Like you I find that the drugs that knock out the pain make me weaker and more wobbly. Hoping they will come up with something better for all of us.
It’s a double edged sword isn’t it. I’m not with this pain though.
I am sorry, Neil. This disease is such a terrible burden for us that are afflicted with it.
I've given up fighting the sleep problems. If it isn't the MS/menopause then the fricken seagulls start screaming outside my bedroom window at 4 in the morning ! I tend to sit up in bed and watch youtube or tv or do a spot of knitting until I fall asleep again. If its past 5am then I get up. Have you tried propping yourself more upright in bed Neil?
Hi Becky, I do something similar. I put my knees up which relieves my back and I watch UA-cam as well on my iPad. Thing is I’m tired and can’t stay awake, but as soon as I lay down again the pain returns after a short while. I’m a very light sleeper, you can keep your seaguls😊 I can’t seem to sleep propped up. x
Such a painful desease. I'm wondering if a cool bath on your legs help any at all. Do you think maybe a temperpedic mattress help. Wish I could think of something to help you
Thank you Sondra, I’ve tried everything with the burning legs. Nothing works. I don’t find my bed I uncomfortable, it’s fairly new and has a lovely comfy mattress. It’s just this knackered body of mine. I went back to bed at 5am as I felt my pain had calmed a bit, managed to drop off to sleep only to wake again at 6:30am in the same pain again. I gave up, and got up permanently.
@@NeilBradleyMS,
Not to contribute to your delinquency, but have you tried weed? (I haven't done so myself, but it comes recommended to me all the time.)
@@NeilBradleyMS I'm so sorry for your pain. As miserable as you are with the pain it sounds like steroids may be your best hope. If it was me I would pester the daylights out of your nurse until she gave me the steroids. I'm thinking and praying for you and Teresa during your difficulty.
Neil, what are your thoughts of the drug called ocrevus. It's been getting some attention and I thought about mentioning it to my doctor. I never know what to believe when it comes to knew drugs and you seem to have broad knowledge on the subject.
Hi Matthew, I was actually scheduled to start on Ocrevus just as soon as I’d had my MS diagnosis reconfirmed by seeing a Professor for a 2nd opinion (July 10th). However, it would seem my MS diagnosis is in question now so I don’t think I’ll be going on it now.
I’d done my research, and I’ve also watched videos of people who have been on it. They say it’s good, some say it’s improved their mobility. This basically sold it to me. I was also ok with the side effects too. I recommend you search UA-cam and have a listen to what they’ve got to say. It’s definitely one of the best Disease Modifying Therapies.
@@NeilBradleyMS Thank you so much Neil. I hope they can figure out whats causing your condition. Your symptoms so much mirror my own and it's hard to believe we can share so much clinical symptoms but have a different diagnosis. I wish both of you much happiness and just know this, that you are loved by many people for all you share and I'm personally inspired by your resilience.
What if you did something my brother did at a hospital er. He if not assisted told them he would collapse in the floor. they helped him. but he would have he was in agony. you may have to do it. sleep deprivation is horrible for Ms.
Hi Tom, like your brother.. sometimes it may well be necessary to do something radical to get there attention. 😊
I've on a previous post of yours you was thinking about DMT plegridy.
Do you still have that?or did you not do it.
Im on it but to be honest its makes me feel crap.
Hi Michelle, no I never went on it. I think most of these type of drugs will make you feel crappy to be honest, especially when you’ve first taken them.
Hi
Just seen your latest blog and I get it.
It goes on and on.
I'm rrms but I don't seem to be getting a good day at all.sleep is horrendous.
It's the back thing that really is getting to me.ive just got out the bath laying on the bed and my back hurts like hell.
It feels like it happening fast for me but I'll wait to see the neurologist with the mri results.
Hope you get a better night x
Michelle Mountier Hey Michelle, oh yes the back pain is horrendous and know that I do understand. For me the muscles either side of my spine feel frozen and stiff. It doesn’t matter what I do, or how many exercises and stretches I do. NOTHING relieves it. Take care. 🙏
How are you?
Hi Tom, thanks for checking in on me. No improvement with me at all, I’m just trying to cope hour by hour with very poor mobility and pain.
When you consider only as little as eight years ago I was walking several miles a day (hobby), as I loved being outdoors. Teresa and I had also not long purchase our forever home (where we live now) and I was doing all sorts of DIY jobs on the house. The point I’m making is I was at full power and strength, which has ALL GONE in eight years.
It’s very depressing that I can barely do anything now, and it’s very frightening how quickly whatever is wrong with me has progressed.
Hour by hour my friend.
How are you doing Tom?
I feel dastardly putting a thumb up to this video, as though I'm saying, "Haaahahahaaa! I relish your pain! I bathe in your misery! 👹"
I don’t see a thumbs up as ha ha, it’s actually helps my channel. But I do understand and thank you for your message.
Neil can you legally use CBD oil? Things are worse at night because there is less to distract us. CBD oil helps my spasms and a lot of the pain I get (and I get plenty). I get the buzz as well. It can go from my ankles clear up to my chin at times. It can be a fine, light buzz or a heavy deep throbbing buzz. Drives me nuts. I hope you can get some help.
Hi .. yes I’ve tried CBD, several different strengths. Spent a lot of money on it as well. I heard it’s good for spasms and pain, sadly I didn’t notice anything though.
@@NeilBradleyMS Oh that is awful! My doctor wanted to give me gabapentin but I'm the single parent of a handicapped son and I cannot afford to be slowed down like that.
I completely understand your reluctance to take Gabapentin. You need to be alert for your son bless him. I bet he’s the apple of you eye😊
@@NeilBradleyMS He is my heart, he and his older brothers are my whole reason for living.
May God Bless u are under severe test pls research abt Islam .You very very strong man with all that pain u hold u dignity.
Thank you Ahme, you’re very kind. 🙏
Diclofenac sodium 50mg works for me
Oh and I have to push myself up and hold on.
Me too, my knees give way and so does my back. Slowly I start getting lower and lower. I have to straighten up holding on, then it just repeats until I go and sit down.
Hi Neil
How you getting on?getting anymore sleep?
What did the ms nurse have to say?any steroids ?
Michelle Mountier Hi Michelle, not so good. Mobility the worst it’s ever been. I feel like the hospital is ignoring me, I email last week now and I’ve still not had a reply. Sleep is still rubbish to be honest. How’s you?
I've not been so good today.jab day.
My back ,calves and hip hurt and are making me walk strange.i also have head pain.not headache as such.
I cant believe your not getting any help!
Where do u live ?I'm in harlow essex and so far my ms nurse really nice but takes about 3 days to reply.
My neurologist is lovely also
Dr sharmelee gnanapavan.
Keep fighting and keep ringing them all
Michelle Mountier Sorry to hear things aren’t good with you at the moment. My MS nurse would always respond to me in about three days also, but not recently. I feel like I’m annoying them, but I’m always very polite when I make contact. Not sure what else to do. I emailed last time, next week I’m going to ring.
I’m in Derbyshire. Pleased you’ve got a nice Neuro, mine is ok.
my sister uses medical marijuana. many says it is a game changer. she also has ms.
.
I’ve heard it amazing stuff, still difficult to get in prescription in the UK though. I would love to get some.
That's just awful. I hope you've had better luck now getting your letter from the Professor so that you can start therapy.
Thanks Susannah, I’m in the process of chasing it this last couple of weeks. But the Professor is away in America at the moment, so I’m getting nowhere fast.
@@NeilBradleyMS gosh that isn't very good. I've seen/read that people have gone to the Hospital and then received treatment, is that something you could try when you're in pain, etc?
Susannah U I once kind of complained about having to wait to long, it was then they suggested I go to A&E and get admitted. Being admitted to hospital is something I want to avoid at all costs. I can’t even sleep comfortably in my own bed, never mind about a hospital one with everybody around watching. So I don’t feel it’s an option.
Sorry Neil...did you get any sleep yet? GABAPENTIN didn’t help at all...
Hi Michelle, not yet hopefully I’ll get some sleep tonight as I’m extra tired. Have you tried Gabapentin for pain are you saying?
Smok e weed its going to help you with your sleep serious
I've sussed it lol.
You poor man you need some help.
You cant be expected to live like you are without some pain killers
Michelle Mountier Nerve pain killer such as Gabapentin, Pregabalin and amitriptyline worsen my mobility even more. They turn me literally into jelly which is why I don’t take them. Double edge sword I know.