Hi Neil , I agree being in the car is the worst. Car seats are suppose to be designed for comfort but with back issues ,there anything but comfortable. I know even a short trip can cause me back discomfort and leg weakness. I guess there’s nothing for it. I’ve tried cushions and that doesn’t work either.
Hi Jim, good to hear from you, thanks for your message. This video is getting on a bit now (7 years) so your comment prompted me to watch it again. I completely agree with you, I still have to sit on a cushion even now. My back is significantly worse now than it was when I made this video. All the best - Neil.
Hi Neil. Greetings from Australia 🇦🇺. I been watching your videos. Oh i got same back issues as you describe. I tell my husband it like acid in my spine. Sitting in a car excruciating on my lower back. I cannot cook as standing affects my lower back THEN i worse trying to walk etc. My hallway walls i hang on to. I wish you well and your sweet wife 😊
I'm so sorry you're suffering with similar pain to myself, yes I can relate to holding on to the walls. I do what I call furniture walk in the house, holding on to anything to help steady myself. Not a day goes by without multiple near miss falls and wobbles. Acid in the spine is the perfect description, I agree. I quite often say I've got knives in my back and somebody it twisting them. Thank you for your kind words, I too wish you well.
Glad to hear your post. Sometimes I feel bad for posting uncomfortable topics were I am not so positive. The support group is for people to vent. Please post and take care.
Thank you Emilia, and I’m sorry to hear you’ve had an MS diagnosis. It’s good to know we’re not alone, and neither are you! Im actually in the process of being re-diagnosed, they no longer think I’ve got MS, instead they believe it could be something called neuromyelitis optica. I’ve documented this in more recent videos. Take care, and look after yourself.
Hey Kevin, yeah! Right in the centre of my chest.. the electricity you describe I would say would be some kind of nerve sensation, a bit like pins and needles. My theory is, the pain is caused by poor conduction of the nerves which supply the muscles in the chest wall. The muscles then react to this with pain! My MS Specialist whilst she said the chest pain is classic MS, she disagrees with my theory because (she said) it a different set of nerves which supply the chest. Hmm, I think I disagree with her though lol.
I've experienced the MS Hug and the pain with that is in the same area on me. I also am having sharp, burning pain up my Spine, to the base of my neck!
Thanks for sharing about the chest pain. When you showed where it was it came as a surprise because I have the same thing in the same place. I never thought anything of it until now. I have a long hair Molly too. Cheers.
Hello Patty, and thank you for your message. Yes, I still have this chest pain, even now as typing this message. It never actually goes away ever, only into the background. This video is a few years old now, and at the time it was absolutely crippling pain. The Dr's don't know what it is so I've given up asking them or mentioning it now. I do however think it's something to do with my condition, but when I present this to my Dr she dismisses it and said it's a different set of nerves. I know what I know though, and do my own research. Dr's don't know everything as far as I'm concerned. Well it's lovely to hear you have a Molly too! Sadly we lost our beloved Molly back in January 2018, she broke our hearts she did but gave us a few days short of 20 years love. Prior to loosing Molly we also lost our beautiful dog Bess (in 2015). They were such good companions, but so sadly our beloved pets simply don't live long enough do they. I hope this message find you well. Take care.
@@NeilBradleyMS look up Aaron Boster MD on RUclips. He's a neurologist in Ohio who educates people on MS. He's awesome. I am glad to hear Teresa is doing better. Thank you for replying.
Thank you so much Patty.. and yes I’m already subbed to Aaron Boster, he’s most excellent and brings a lot of education to many people doesn’t he. Be well my friend.
Sunburn is precisely the same way I describe the burning pain in my legs! I think its the closest match in describing the sensation. Teresa, do you have MS.. because the pain you describe can also be attributed to Sciatica, as you may well know this also produces pain from the lower back, into the bottom/hips and down the legs. I hope things improve for you very soon, take care.
Yes!! This is quite an old video now, but I still have the problems with my back. It does feel like pressure in my back, but it also feels like the muscles are completely frozen. The muscles are in fact stiff and they won't relax, this effects my ability to walk terribly. I find the muscle relaxant drugs such as Diazepam or Clonazepam are helpful.
JOYCE HERE FROM CANADA. I UNDERSTAND WHAT YOU SAID ABOUT WEAKNESS. I WEAR A BACK BRACE WHICH REALLY HELPS. SOMETIMES I CAN HARDLY WALK BUT THE BRACE BUYS ME TIME.
Hello Joyce, apologies for the late reply.. I’m a bit behind with answering my messages. I’m really pleased the brace works for you, it’s about finding something that works and sticking to it isn’t it. I’ve tried something similar that straps all the way round my back and tummy, I feel it does help some by applying pressure to the muscles. Thing is it’s so blooming uncomfortable, but like you say it can buy us time and we’ll try anything right!! Take care Joyce, regards Neil.
I have not been diagnosed with ms but I have all these symptoms and I have the weakness way bad, I did have an MRI and they said I had spurs on my spine, but this is much more than that my eyes go weird and my left leg is numb and it hurts and electrical feeling stuff going on thanks for the video makes me fight on for a diagnosis for what ever it is, Wish I knew if you can have MS without them finding legions, guess my next thing is to get a spinal tap.
Hey Phillip, I’ve come across a lot of people on my channel in a similar boat to you. They have all these symptoms that point to something neurological going on, but scans and tests etc don’t seem to show anything up. In my experience the lesions in my spinal cord on my MRI scans were very subtle. It took a very trained eye to spot them, I never would have done. Quite often it’s a difficult quest getting that diagnosis, but stick with it. Took me over a year.
I get the same symptoms and my back burns from the neck down. I can't wait to get to a nuerologist. Thanks for sharing,I know I'm not crazy,someone else has the same symptoms. I saw just a month ago on my chart,my x-rays say I have sclerosis on the low back,does anyone know if it means Ms? Can someone translate for me,because my doctor sure didn't. This is why I'm searching for a new doctor
Hi there, ok well the word “Sclerosis” means scarring of the nerve or a lesion. Multiple meaning more than one. Put them together and you get MS. It sounds to me like you need a firm diagnosis instead of being left wondering what’s happening. I hope that helps a bit.
My partner said to me the other day why do you lean on the sides when you are preparing food and cooking. When I thought about it I find it hard to stand upright for long. It also hurts my rib cage as you mentioned earlier about your chest pain.
Hi There, I do the same .. the muscles in my back which a responsible for holding up straight your upper body (they are called Erector Spinae muscles) are weak or getting disrupted signals (via nerves). There have been times I've not even been able to stand straight because oft this, I'm literally collapsing to the floor. And yes, as you say the rib cage.. I still get this pain now, and I think it's all connected even though my Dr disagrees. But, I don't go along with everything Dr's say because I've proved them to be wrong in the past. Even to this day, my back is one of my worse symptoms.. the muscles are so tight and full of tone, they are over stressed and incredibly painful and because these same muscles are responsible for our balance, the pain stops me from walking properly as well. Pay close attention to these muscles, you might find a connection as well. Take care - Neil.
Hi Teresa, not good at all.. I always find the pain is much worse at night time when I go to bed, not sure why that is. All it takes is a few nights of bad sleep and you feel worse don't you.
Not my arms, I'm full strength in my arms and don't have any problems with them as yet.. but I DO KNOW what you mean because I get this exact feeling in my legs! Usually this happens when I've been doing a bit too much.
Hello Avril, no problem and I'm glad you've managed to get your YT fixed.. hopefully it will behave from now on. I know what you mean about the therapies, sometimes I just "know" something isn't going to work but I suppose we have to try it so at least we can rule it out.
There he is! I was starting to wonder. haha Your first few minutes of your day sound an awful lot like mine. Thankfully, I don't have stairs to deal with. Like I mentioned to you, you remind me of myself especially when you question what these symptoms could be caused from. It's so hard for me to accept that all these different things are from MS, but there certainly isn't any other logical explanation for it all. So I guess we have to start accepting it lol. Keep on keepin on!
Hello Biddi4, nice to hear from you again as always. Ah, good that you don't have any stairs.. as a rule I just have to be careful with the stairs especially coming down them. Going up them has recently become a little bit more troublesome, particularly in the middle of the night. I get to the last few stairs and my legs literally feel like they're giving up, I think tiredness also plays a bit of a part here though. Makes you wonder, had you not been diagnosed with MS how many of these different symptoms would still be around doesn't it? Like you say, when there isn't any other explanation and you've ruled out all of the obvious .. then I think it would be logical to assume there's a good chance its the MS. I still haven't completely accepted that this chest pain I get is the MS, but I'm not sure what else to think really. The only thing I've not had is an MRI, I'm wondering whether or not to suggest it. Keep on Keep on indeed, you too my friend. Take care - Neil.
I suffer from back pain and it shoots down my leg. I've always thought it was my ciatica. But recently I've been waking up in agony. Today I went out with mum and I was having trouble walking almost like I had drop foot. But I don't know if it was drop foot. I was limping and wobbling all over the place. I always have wobbly legs walking down the stairs and I get very dizzy as well at any point in the day ( my father will say that's what u get for laying in bed all day. he is a fine one to talk and he doesn't really understand at all he hasn't even tried to understsnd). I get up from out of chair I'm dizzy I'm just dizzy all the time and my tinnitus is so loud!. Today has been terrible. Even bending down to pick stuff up or bending over to put stuff in oven or just basically bending over to do general stuff hurts! it's constant atm. And I've been having chest pain also right in centre where sternum is its like indigestion. And I wake up with this sometimes and I think how can I have indigestion I've not eaten anything. And it spreads under my rib cage also. The other week my other half let me have a lay in and I had a scare I had an agonising Sharpe stabbing pain in my left breast ( soz tmi ) and it was spreading down my left arm I instantly though omg I'm not having the start of a stroke. I eventually fell back to sleep but it really scared me. I'm noticing alot of new symptoms lately.
Hi Nicola. Sciatica is literally so painful, its caused by a disc in your lower back pushing on the sciatic nerve, this is when you feel the 'shooting' pain down you legs, its important to get this ruled out as it would be easy to blame MS. Drop foot tends to be when your walking and you're unable to lift your foot up properly in order to take the next step.. its quite easy to trip up a lot with drop foot as I found out a few years ago when I had it quite bad. I find the wobbly legs stems from the weakness in my back, which I tried my best to describe in my video. Not sure what the dizziness is, this could well be related to your MS depending on where you have lesions. I've found when I've been trying to explain how my MS effects me to people, you quite often get a blank look because its so difficult for them to understand how it effects the body. It's always easier to have something visual, but as you probably already know this is an invisible disease. For example, this morning I feel pretty crappy but I look absolutely fine so to the majority of the world I look fine, so I am fine! My chest pain is literally on the outer edges of my chest wall, sternum and ribs.. its definitely not more internal like stomach area etc. It also never goes completely, its always there.. there's never a day I don't feel it. How would you describe your chest pain, outer pain (sternum/ribs) or inner pain (stomach area). It does seem like your having a lot of new symptoms, make sure you make a note of them and also date and time them. You can then present this at your hospital appointment when it comes. Take it easy Nicola, Regards - Neil
Hi Neil ive been getting this chest pain for about 3 months and my god my back hurts like hell especially if ive managed to get some sleep I seem to wakeup with the bottom of my spine were the leasions are, I was putting it down to anxiety and stress as it seems alot worse then, sometimes if I try to walk through the whole house as im walking I feel like im being pulled downwards and the pain is so bad that my voice goes and I start shaking and get pain in my wrists, Ive just bought one of those back supports that you use for cars and computer chairs, I have to say the releif was amazing I would feel it pushing my spine in I just wish I could have that feeling all the time, Ive had a bad few days my old tablets have worn off and my new ones havnt done a thing so I spent last 2 days sleeping in the day cos I was up all night, I have to say this pain had me crying I was sat downstairs rocking back and forth as my ankle was twisting and everyone was asleep, I was sat in the dark I dudnt know what to do it was that bad, im gonna ring my doctors today to see if they will put the dose up cos I cant handle this pain its a 9+3/4 pain ive put pregabalin back up too I think it was a bad idea dropping 100 ml so quickly everything I looked at was like it was on a slope and I had severe headaches so back on them for now. anyway its 3 in the morning so im gonna try to get some sleep ive got the fan blowing a gale in here and I still cant get in bed cos the duvet is too heavy on my legs and im still at the bottom cos I cant get comfy the other way round, ive got teresas email now so gonna take some pics of my cats for you both and of us so at least you'll both have a face of us when we talk lol oh also does Teresa know her email is still on show I wasnt sure if she wanted to keep it on or not but just let her know anyway, I will email her when I feel abit better, love to you both and huggys for molly x x x ☺
Hi Sue, I can't stress enough if you haven't already, then you really should get the chest pain checked out or at least mention it to your Doctor. I've been thoroughly checked out and they've ruled out any heart issue, which you need to do also. I'm no stranger to back pain Sue, as you know from my videos. My back is so very weak and I find I have to keep moving around with gentle exercise to keep it from getting worse. Just to add to the mix, somebody up there must of thought Neil doesn't have enough ailments, let's add Sciatica to the mix.. I've been getting twinges of recent days. The being pulled downwards feeling I think I can explain, I think it could be weakness in the leg muscles more than likely caused by the MS. If the muscles weaken, they won't function so well (keep you upright) and hence the pulling down feeling if that makes sense. So pleased the back support is giving you some relief, it's brilliant isn't it when you just find that "something" you need. Not good that your new tablets aren't working for you just yet, sometimes these medicines do take a bit of time to get into your system, so you have to allow a couple of weeks plus. I did think you dropped the Pregabalin by too much and a bit quick, you have to slowly ween yourself off these type of drugs, it's very important you do it slowly and carefully monitoring yourself through the process. I can relate to the duvet being too heavy! It will indeed be nice to finally see a picture of you guys. Email is ok, but it's not quite as 'instant' as an App called Messenger. This is the private messaging side of Facebook.. a lot of people don't like Facebook but to be honest they don't properly know how it works. You only add on Facebook your friends and family, your posts remain private between these people.. so really Facebook is what you make it and it's by far the easiest way of communicating and much more instant. I hope the pain give you some relieve soon Sue, look forward to hearing from you soon. Take care, Neil.
Hi Sheila, I think the back ache & weakness (this video) is causes by the MS. But for several years now I've been getting this chest pain that no Dr is able to explain. They thought it was "Costochondritis", and I was treated for it with anti-inflammatory medication but it made absolutely no difference AT ALL. Recent months the pain actually hasn't been too bad at all, in fact it's the best its been for years. I'm positive it's something to do with the MS and is not Costochondritis. Yes, the Fibro is horrible isn't it.. my wife Teresa is being treated for this as she gets so much random pain everywhere. It certainly is horrible. Take care.
Hi Mike, apologies for not responding to you sooner, it’s been a bit of a hectic week for us. I now know my extremely painful back is a result of my condition causing stiff muscles. I take a muscle relaxant called Clonazepam which helps somewhat with this, but it’s also a double edged sword because it relaxes all my muscles. I have significant weakness in my legs, so muscle relaxers aren’t always the best thing for me, but having said that it is the best drug I’ve found so far they helps me.
Hi Neil, I too have this nagging lower back ache or shoppers back as I called it before diagnosis. I Neuro Physio Therepist says it is as a result of my leg weakness and more specifically my hip flexor muscles which she tells are the first to be affected with MS. I have this ache as I am typing now. Standing on one spot makes it ache. I think because my legs begin to feel weak so I shift from one foot to the other. I find myself searching for a chair. So in conclusion I do feel it is related to MS. I too use Tiger Balm which does seem to help. Listening to you now I can hear your pain is different to mine but none the less I felt it might be helpful to share with you. Oh yes - waking in the morning you feel like you've been kicked by a horse. Sitting or being I. Bed all night - it takes a while to get my legs working. Anyway Nice to meet you. Regards Trev
Hey there, Shopper back! .. I can definitely relate to that description. Hmm interesting about the hip flexor muscles, I've got a lot of leg weakness but also, especially when I wake up at night and turn over my legs start violently shaking. This is so much so that sometimes I can't stop it, I feel the source of this is in the hips (hip flexors?) .. so this is very interesting to me. Yes thank you very much for sharing, the information has indeed been very helpful and interesting too. Totally relate to sitting for periods of longer than ten minutes, and yes especially being in bed all night.. everything stops working doesn't it. Kind of takes the body time to warm up and 'get going' again. Thanks a lot for your comment Trev, good to hear from you and I hope you're managing your symptoms ok. Cheers! Neil.
Thanks for reply. I will be checking out some of your other videos. When I stretch either my legs or arms in the morning they spasm like a rabid dog. It makes me smile for some reason. I thought my leg weakness derived from my thigh muscles until my Physio pointed out it was more to do with my hip flexor's. I now can't crouch or put any weight on my legs for any length of time as they weaken to the point of slowly folding meaning I end up on my arse. I now garden using a seat which reverses so I can kneel on it using what were the legs when a seat now as support handles. I look daft I guess but then MS is no respecter of looking cool :) Regards Trev
Hi Trev, yep I can relate to most of what you've said. Also for me when gardening, I cannot crouch for many minutes.. like you the legs start to give way and then I actually struggle to get back up. If it wasn't for my upper body strength, I'd be really in trouble. I use a soft leather large cushion to kneel on in the garden, it's pretty good because it's water proof as well. Regards - Neil.
You are the first MSer I have come across with the same problems with their legs which in itself a comfort. I try and explain to my MS doctor about this year on year gradual decreasing of my leg strength and how I worry I don't seem to fit into the relapse box in that I don't get specific relapses with recoveries it is more subtle than that. My worry is of it turning into secondary stage. He is going to have me do another MRI in the Spring to check for activity. Thanks for you replies. Trev
Hi Trev, Sometimes I'd be gardening (hobby) and I might be stretching slightly and bending my legs at the same time, but without realising it I'll be in this position too long. It's then I realise my legs have weakened to the point I haven't got the strength to straighten up, I then quickly realise I'm in danger of toppling over. Sounds familiar? I understand about your concerns about not fitting into the relapse box, I WAS EXACTLY THE SAME and decided to raise this with my Neurologist. To give you a bit of history, my last major relapse was Feb 2012 and as of Sep last year (2016) I don't feel I'd relapsed since (4.5 years). My Neuro thinks I have, but I told her I believe these were just flare-ups. I know my own body, and that's important to learn the difference isn't it. My Neuro thinks I'm transitioning into Secondary Progressive, but I'd pretty much worked this out for myself also.. if you haven't already check out the video I made on this. Trev, obviously the Secondary Progressive stage sounds all scary but my MS nurse explained it by saying it's just a label. Also, usually it's very slow and subtle and if I'm completely honest with you Trev if I've got this god dam condition I prefer not to be relapsing and coming down with new symptoms all the time never knowing where I am. I prefer to try and manage my existing symptoms that hopefully aren't changing too much, and try my best to slow down the progress by eating a good diet and gentle exercise. Thing is with MS absolutely everybody's condition is completely unique, as I'm sure you can appreciate. Look after yourself Trev, Regards - Neil.
Thank you for asking Zanne, She is actually very well, we've not long taken her to have her claws clipped at the Vets.. the Vet examined her and is pleased with her. She's eating really well, and harassing me as usual which is always a good sign she's feeling ok. She turns 19 in Feb !! Neil.
I take Tizanidine and that helps with the pains and muscle problems from MS. I take Antivert for dizziness and also Nuvigil for fatigue. You are describing MS hug in this video. I hope you get some meds to help you.
Hi Nordonna, and thank you for your comment and your kind words. I'm glad that you are getting some relief from the meds you are taking, and hopefully that side effects are down to a minimum/non-existent for you. As I've had several tests which have all come back negative, I'm slowly coming around to this way of thinking also that it is the MS Hug. However I understand the MS hug to feel like a skin tightening around the trunk area, but this definitely feels musular to me (Ms MS Specialist and I disagree). My theory is the muscles around my Sternum/ribs aren't functioning properly because of the MS and the results is severe pain. Regards, Neil.
Hi Neil, I think you're most likely correct. I've been living with M.S. since 2000. I know you take Pregabalin, which is a variant of Gabapentin. I have found that Gabapentin is much safer and more effective for me. Be well and keep up the vlog. M.S. can make a person feel very alone. Your candor and courage to share has made this M.S.er less so. John
Hi Zanne, To be honest with you I've not bothered with PS even though I've been referred to them several times.. this is partly due to a past experience whereby they weren't really much help. My upper body strength is very good, the MS only effect my lower body, oh and I have altered sensation across my tummy and pains in the chest, which they say is MS related but I'm not convinced. I hope you are well. Neil.
I am well ... thanks much for asking. I've found that if I rely on my own instincts, they prove correct. I had a surgeon who wanted to take my arm apart & put it back together again (I proved later to have frozen shoulder and cup rotator problem) but I took my records to two other osteopaths who gave me Phys Therapy & prolotherapy injections. In a year my arm healed.
Good for you Zanne! I too am very analytical and like to do my own research.. I think you have to now days. I believe far to many people just see Doctor's as these 'God like' people who can fix anything, I've learned that's not always the case, and quite often (like with you) they are wrong.. After all they ARE only human as well. Having sad that, I for one am very grateful to them.. they have saved the life of both my parents over the last ten years.
1st of all I totally understand about your cat Molly. My cat Lived 19 years. It seems like your pain in your chest might be gas? Trying different positions at night proper knees up. Lay on your side. See another doctor if it is related to your Digestive system. Your back sorry you have any pain. Do you have numbness? Rehab therapyIs the best place to find the answer. Wishing you well. There is adaptive equipment wedges that can help . Sorry if I guy you confused with another MS patient that looks so much like you. He is from Copenhagen. I can tell your from the UK somewhere?
Hello Christine, yep I'm UK from Derbyshire. Pretty sure the pain in my chest isn't gas, it feels more muscular on the outer suface of my chest (sternum/rib cage) rather than a digestive issue. When I'm in bed I have to lay on my back, because to be honest laying on my side makes it much worse. It's a really mystery, but I shall keep harassing the Dr's about it that's for sure. I have the weakness in my back all of the time, where as the pain comes and goes depending on what I'm doing. It doesn't take much activity to bring on the pain though, which as a rule usually makes the weakness considerably worse too. I think I do have some numbness in my back, but a few years ago back in 2013 I had considerable numbness in my stomach/chest area. This is how I formed my theory that my chest pain is kind of a result of the numbness, in other words the chest muscles receiving random nerve signals caused by the MS, hence the resulting pain (MS Hug). Essentially that's what happening with my legs muscles too, just a different area. Hope that makes sense. Thanks for the goods wishes Christine, sending them right back to you. Regards - Neil.
You know I was thinking about your lower back. I get Botox treatments on my tight muscles. I have been gotten Botox in my lower back. I wonder if your pain is from tight muscles? It seems are more mobile and they probably would recommend stretching like lean on your stomach if it is tolerable. Get up on your elbows if that is tolerable. Stretch stretch stretch I use a stretch 3 times a day.
Thanks Christine, Yes I'm pretty sure the weakness in my back is caused by stiff muscles which I'm pretty sure aren't functioning properly because they aren't receiving the correct signals due to the MS. Come to think of it, I seem to recall I'm being referred to Physio (after my recent visit to see my MS Specialist).. I'd actually forgotten about that! They tend to suggest exercises to try and help, so I'll bear this in mind. Appreciate the thoughts, I hope you're keeping ok. Thanks - Neil.
NEAL BRADLEY AIM FINDING OUT I HAVE. THE. SAME PAIN ALL YOU SAID. IAM GOING THOUGH. THIS. ITCHING IS THERE TOO. THE CHEST. THE BACK. I NEED TO GO SEE MY. DR.......THANKYOU. FOR THIS. MESSAGE. NEED TO KNOW. TOO. 🙏
Hi Lucy, ahh you’re very welcome. I’m glad the video proved somewhat helpful to you. Good luck with your Dr’s visit and I hope you get to the bottom of of the problem. Take care.
I realise this video is from a while ago and I hope your back is feeling better by now. But the way you described your back issues, particularly not being able to walk right when you get up, pretty much describes how I felt a year ago. Except I also had pain. And the pain was becoming unbearable and it was spreading to my legs. Anyway the reason I mention it is because after some research I became convinced I was displaying signs of vitamin D deficiency, something not uncommon here in the UK because of the lack of sunshine. That, coupled with the fact that I hadn't been getting out enough, it all made sense, so I decided to take vitamin D. After 2 weeks of daily 2000 IU I started to feel significantly better. After 3 months the pain and all the strange sensations in my back and legs were gone. Have you had your vitamin D checked recently? Perhaps it's something to look into...
That’s amazing.. I’ve not had it checked but I do take Vit D supplements at night. I think I’m taking 5000iu tablets, I’d have to check the bottle. I’m also taking Vit b12 and Calcium & Magnesium in the hope they will help.
Pretty sure, I think the MS is disturbing the signals to the muscles in my back causing them to malfunction and stiffen up. That’s my theory anyway. I do however feel taking the supplements helps though. I appreciate you making the suggestion regarding the Vit D, thank you.
The Dr's here doesn't care period i live in Columbus Ms where if you've had a bout of depression that is the First thing they think is wrong!! So frustrating so when you're telling them these multitude of symptoms that you're experiencing they automatically sum it up as you're depressed!! So my heavy legs..my facial pain the itching the burning of my toes slurred speech and so on is Only from depression?? I cannot!!
Hey Natasha, you’re not on you’re own there.. so many people have written in on my channel saying very similar things. I’m no Dr but like you, I honestly can’t see how they come up with a diagnosis of depression. So very sorry to hear you’re struggling.
Thank you Natasha, I wish you luck with your quest to get to the bottom of all of the symptoms you describe. Hopefully you can find a Dr that knows what they’re talking about. All the best.
Neil, your Molly looks like she'd kick my 5 cats arses, mine only have to hear the postman and they are on their tummys doing army crawls across the floor and around the corner before you can blink mine are quite large too but are a bunch of pansys, mine like Molly are very vocal we only have to say bedtime and they all run off moaning at us and doing chatter noises, oh as for the backpain I use tiger balm and a marble roller ball that I got from Amazon, lately it feels like ive had someone kicking my spine all night and I have leasions on my spine and the pain is were the damage is, it feels weak too, ive just got myself a pair of crutchs so I can keep upright abit more as I was finding as I was trying to walk I was slowly bending over to the point of falling over head first, ( not very attractive) lol, oh if you get tiger balm dont do what my fella did and rub your eyes afterwards aww the tears, bless ha 😁 take care, Sue x keep doin the videos they are great.
Glad you're still enjoying the video, Sue FIVE CATS!! Thanks for the Tiger balm Tip, oh and if I do rub my eyes before washing my hands I'll be sure to contact Dave for advice lol Ahaha. ;-) Yes, same as you Sue.. get loads of back pain but more so WEAKNESS.. night times are terrible for me and the back. I've always been a person that falls asleep on my back, my preference but now I can't and have to lie on my side which I don't find so comfortable.
Hi Andrew, the pain is due to stiff muscles in my back. I take Codeine which helps a little, but I’ve recently discovered Diazepam helps too as it’s a muscle relaxant. However you have to be very careful with Diazepam as it can be addictive if used incorrectly.
andrew i I’ve been on Lyrica since 2012, but recently realised it was doing nothing for me when I kept forgetting to take it, and noticed no difference in pain. So about three months ago I stopped it completely and haven’t taken it since.
andrew i Lyrica is a nerve pain killer, you may get better pain relief with an opioid type pain killer. You’d have to speak to your Dr about the best one.
I have symptoms of tingling burning itching so on...i feel my skin have sunburns... did 3 mri’s with contrast 1 each year apart... all came perfectly fine.... i have a buzzing in my leg... i will have some analyses next week and another 3t mri cervical and brain with contrast substance! I had electromiogram and VEP which came perfectly fine! Doctors say could be lack of vitamin b12, or anxiety and psychosomatic disorder, they say it is not multiple sclerosis... in three years apart something wld have come in the mri, i mention i did mri in 3 different places, one of them in germany! Idk if anxiety can give suck burning tingling numbing sensations...can t stand the feeling of burning when even soft clothes touch my skin... even my fingers burn:((( i have same feeling on my cheeks as well.... chest , hands, legs, feet, fingers...
Hi Alice, I’m really sorry to hear your going through all these symptoms. I’ve heard so many times that lack of Vit B12 could be a contributory factor. I do take it as a supplement at night, I just try everything I can to minimise symptoms. I’m stunned that you’ve got all these symptoms yet the scans still come back clear. Do you have any muscle weakness or problems walking etc? Incidentally, one of the very first things for me was I hated the feeling of covers on my legs, still do .. material of any sort is quite often painful for me. My feet burn, so do my legs and hands. Does make you wonder doesn’t it. I’ve never heard of anxiety causing burning sensations.
Neil Bradley yes, true! But till i get my 4th mri and see that all is fine i am still concerned. If this comes out fine after 3 years , means it is not MS for sure..... Till then i keep my fingers crossed....
+Neil Bradley sorry i bother you again... i am just desperate as i get no answers... can you please tell me first time you had an mri, first time it did come something on it? Any change ? They could see on the mri that something is wrong?
ALL these symptoms described by you, are absolute typical MS related. The chest pain is actually a misnomer, as in fact, is muscle pain. Most of the pains are muscle related. Muscles do not anymore have enough information from the brain, hence the whole spectrum of symptoms. The so called "MS hug" you are misinterpreting as chest pain. No one can provide any real help with the array of symptoms MS brings. I've gotten used to the "idea", which might be hard to accept in early stages and most of all I do not detail my symptoms with anyone, as I know for a fact, it does irritate and annoy people. It is a "take-it" or "leave-it" sort of a deal. Read the literature, explore other cases of MS, inform yourself as well as you can on multiple areas of the disease....and...deal with it, that's pretty much the bottom line of it. :)
Hi Laura, thank you so much for you comment (and sub) You have basically just put it in a nutshell what I've been trying to explain in my video with regard to my chest pain theory. My theory was if MS can quite clearly effect the muscles in my legs and subsequently cause pain and problems walking, why can't it have the same effect on the muscles in my chest? Especially as I've had numbness and altered sensation (still have) on my stomach area. The muscles in my chest are just reacting differently to the to the random/broken signals and don't know what to make of it, so their reaction is pain. I put this theory to my MS specialist but she didn't agree with it, but I think its very plausible. I find that there are certain things I do which antagonise the pain, like typing (using both arms), driving (again both arms), sitting in the upright position for long periods of time (as opposed to leaning back on a settee). Having said that I can simply wake up in the night with it painful - and the pain is phenomenal! Another interesting comment I had from a Chiropractor in New Zealand is, he believes it is Costochondritis but it isn't properly recognised or treated. He goes on to explain that the ribs hinge on to the Sternum, but they also hinge around the back on to the spine (large hinge). The hinge at the back stops works so efficiently putting pressure on the hinge at the front (sternum) and this can cause the pain I am experiencing. (I'll try and find the comment) Thanks Laura, I'm with you there on the bottom line :) I have been struggling coming to terms with it, and I do find that explaining my symptoms to people difficult.. I get the feeling it just goes completely over their heads even though I explain in detail. Some are really interested, but others just move on quickly to another subject. Regards - Neil.
Hi Neil , I agree being in the car is the worst. Car seats are suppose to be designed for comfort but with back issues ,there anything but comfortable. I know even a short trip can cause me back discomfort and leg weakness. I guess there’s nothing for it. I’ve tried cushions and that doesn’t work either.
Hi Jim, good to hear from you, thanks for your message. This video is getting on a bit now (7 years) so your comment prompted me to watch it again. I completely agree with you, I still have to sit on a cushion even now. My back is significantly worse now than it was when I made this video. All the best - Neil.
Hi Neil. Greetings from Australia 🇦🇺. I been watching your videos. Oh i got same back issues as you describe. I tell my husband it like acid in my spine. Sitting in a car excruciating on my lower back. I cannot cook as standing affects my lower back THEN i worse trying to walk etc. My hallway walls i hang on to. I wish you well and your sweet wife 😊
I'm so sorry you're suffering with similar pain to myself, yes I can relate to holding on to the walls. I do what I call furniture walk in the house, holding on to anything to help steady myself. Not a day goes by without multiple near miss falls and wobbles. Acid in the spine is the perfect description, I agree. I quite often say I've got knives in my back and somebody it twisting them. Thank you for your kind words, I too wish you well.
Glad to hear your post. Sometimes I feel bad for posting uncomfortable topics were I am not so positive. The support group is for people to vent. Please post and take care.
Thanks Christine, and no problem - you take care also.
Hi, Neil I was diagnosed with ms in 2016 and I have the same symptoms as you describe.You not alone.
Thank you Emilia, and I’m sorry to hear you’ve had an MS diagnosis. It’s good to know we’re not alone, and neither are you! Im actually in the process of being re-diagnosed, they no longer think I’ve got MS, instead they believe it could be something called neuromyelitis optica. I’ve documented this in more recent videos. Take care, and look after yourself.
Hiya Neil glad to see another post. Your area of pain is in the same spot as mine right in the sternum. Mine feels like electricity going through it.
Hey Kevin, yeah! Right in the centre of my chest.. the electricity you describe I would say would be some kind of nerve sensation, a bit like pins and needles. My theory is, the pain is caused by poor conduction of the nerves which supply the muscles in the chest wall. The muscles then react to this with pain! My MS Specialist whilst she said the chest pain is classic MS, she disagrees with my theory because (she said) it a different set of nerves which supply the chest. Hmm, I think I disagree with her though lol.
I have the same problem with my lower back as well and it’s bad when I sit for long periods of time
Hi Rodney, that’s interesting. Have you had any scans on your back at all?
Neil Bradley sorry Neal I meant to get back to you earlier.. yes I am having an MRI on the 17 th of December and it will include the lower back
Hi Rodney, no probs. Ohh, good luck with the scan.. I’d be interested to see how you get on. Take it easy.
What a lovely way to start the day, nice one Molly :-)
Thank you Sue :)
I've experienced the MS Hug and the pain with that is in the same area on me. I also am having sharp, burning pain up my Spine, to the base of my neck!
Hi there, the sharp pain in your spine could be something called “Lhermitte’s sign”, this is triggered usually when tipping your head forward.
@@NeilBradleyMS Thanks for the info'! I'll bring it up to my Neuro
Thanks for sharing about the chest pain. When you showed where it was it came as a surprise because I have the same thing in the same place. I never thought anything of it until now. I have a long hair Molly too. Cheers.
Hello Patty, and thank you for your message. Yes, I still have this chest pain, even now as typing this message. It never actually goes away ever, only into the background. This video is a few years old now, and at the time it was absolutely crippling pain. The Dr's don't know what it is so I've given up asking them or mentioning it now. I do however think it's something to do with my condition, but when I present this to my Dr she dismisses it and said it's a different set of nerves. I know what I know though, and do my own research. Dr's don't know everything as far as I'm concerned.
Well it's lovely to hear you have a Molly too! Sadly we lost our beloved Molly back in January 2018, she broke our hearts she did but gave us a few days short of 20 years love. Prior to loosing Molly we also lost our beautiful dog Bess (in 2015). They were such good companions, but so sadly our beloved pets simply don't live long enough do they. I hope this message find you well. Take care.
@@NeilBradleyMS look up Aaron Boster MD on RUclips. He's a neurologist in Ohio who educates people on MS. He's awesome. I am glad to hear Teresa is doing better. Thank you for replying.
Thank you so much Patty.. and yes I’m already subbed to Aaron Boster, he’s most excellent and brings a lot of education to many people doesn’t he. Be well my friend.
its from my lower back down through my hips and into my legs. also it feels like i have a sunburn under my skin, if that makes sense
Sunburn is precisely the same way I describe the burning pain in my legs! I think its the closest match in describing the sensation. Teresa, do you have MS.. because the pain you describe can also be attributed to Sciatica, as you may well know this also produces pain from the lower back, into the bottom/hips and down the legs. I hope things improve for you very soon, take care.
Is it like a pressure on back. I have that all the time all day
Yes!! This is quite an old video now, but I still have the problems with my back. It does feel like pressure in my back, but it also feels like the muscles are completely frozen. The muscles are in fact stiff and they won't relax, this effects my ability to walk terribly. I find the muscle relaxant drugs such as Diazepam or Clonazepam are helpful.
JOYCE HERE FROM CANADA. I UNDERSTAND WHAT YOU SAID ABOUT WEAKNESS. I WEAR A BACK BRACE WHICH REALLY HELPS. SOMETIMES I CAN HARDLY WALK BUT THE BRACE BUYS ME TIME.
Hello Joyce, apologies for the late reply.. I’m a bit behind with answering my messages. I’m really pleased the brace works for you, it’s about finding something that works and sticking to it isn’t it. I’ve tried something similar that straps all the way round my back and tummy, I feel it does help some by applying pressure to the muscles. Thing is it’s so blooming uncomfortable, but like you say it can buy us time and we’ll try anything right!! Take care Joyce, regards Neil.
I have not been diagnosed with ms but I have all these symptoms and I have the weakness way bad, I did have an MRI and they said I had spurs on my spine, but this is much more than that my eyes go weird and my left leg is numb and it hurts and electrical feeling stuff going on thanks for the video makes me fight on for a diagnosis for what ever it is, Wish I knew if you can have MS without them finding legions, guess my next thing is to get a spinal tap.
Hey Phillip, I’ve come across a lot of people on my channel in a similar boat to you. They have all these symptoms that point to something neurological going on, but scans and tests etc don’t seem to show anything up. In my experience the lesions in my spinal cord on my MRI scans were very subtle. It took a very trained eye to spot them, I never would have done. Quite often it’s a difficult quest getting that diagnosis, but stick with it. Took me over a year.
Thank you for the info
No worries Phillip, thanks for the sub.
I get the same symptoms and my back burns from the neck down. I can't wait to get to a nuerologist. Thanks for sharing,I know I'm not crazy,someone else has the same symptoms. I saw just a month ago on my chart,my x-rays say I have sclerosis on the low back,does anyone know if it means Ms? Can someone translate for me,because my doctor sure didn't. This is why I'm searching for a new doctor
Hi there, ok well the word “Sclerosis” means scarring of the nerve or a lesion. Multiple meaning more than one. Put them together and you get MS. It sounds to me like you need a firm diagnosis instead of being left wondering what’s happening. I hope that helps a bit.
My partner said to me the other day why do you lean on the sides when you are preparing food and cooking. When I thought about it I find it hard to stand upright for long. It also hurts my rib cage as you mentioned earlier about your chest pain.
I also realised I hunch over when I sit or lean to the side. The doctor checked for weakness I my legs and arms and said it was OK.
Hi There, I do the same .. the muscles in my back which a responsible for holding up straight your upper body (they are called Erector Spinae muscles) are weak or getting disrupted signals (via nerves). There have been times I've not even been able to stand straight because oft this, I'm literally collapsing to the floor. And yes, as you say the rib cage.. I still get this pain now, and I think it's all connected even though my Dr disagrees. But, I don't go along with everything Dr's say because I've proved them to be wrong in the past. Even to this day, my back is one of my worse symptoms.. the muscles are so tight and full of tone, they are over stressed and incredibly painful and because these same muscles are responsible for our balance, the pain stops me from walking properly as well. Pay close attention to these muscles, you might find a connection as well. Take care - Neil.
I bit the bullet again today and sent an e consult to my doctor. It was firmer than I normally am and asked for a referral this time. We shall see. Tc
iv had the same pain and down into my legs. it was so bad last night that i was in tears
Hi Teresa, not good at all.. I always find the pain is much worse at night time when I go to bed, not sure why that is. All it takes is a few nights of bad sleep and you feel worse don't you.
You discussed weakness, quick question does your arms feel like you have been lifting weights all day ? Like zero power left in them
Not my arms, I'm full strength in my arms and don't have any problems with them as yet.. but I DO KNOW what you mean because I get this exact feeling in my legs! Usually this happens when I've been doing a bit too much.
Hello Avril, no problem and I'm glad you've managed to get your YT fixed.. hopefully it will behave from now on. I know what you mean about the therapies, sometimes I just "know" something isn't going to work but I suppose we have to try it so at least we can rule it out.
There he is! I was starting to wonder. haha Your first few minutes of your day sound an awful lot like mine. Thankfully, I don't have stairs to deal with. Like I mentioned to you, you remind me of myself especially when you question what these symptoms could be caused from. It's so hard for me to accept that all these different things are from MS, but there certainly isn't any other logical explanation for it all.
So I guess we have to start accepting it lol.
Keep on keepin on!
Hello Biddi4, nice to hear from you again as always. Ah, good that you don't have any stairs.. as a rule I just have to be careful with the stairs especially coming down them. Going up them has recently become a little bit more troublesome, particularly in the middle of the night. I get to the last few stairs and my legs literally feel like they're giving up, I think tiredness also plays a bit of a part here though.
Makes you wonder, had you not been diagnosed with MS how many of these different symptoms would still be around doesn't it? Like you say, when there isn't any other explanation and you've ruled out all of the obvious .. then I think it would be logical to assume there's a good chance its the MS.
I still haven't completely accepted that this chest pain I get is the MS, but I'm not sure what else to think really. The only thing I've not had is an MRI, I'm wondering whether or not to suggest it.
Keep on Keep on indeed, you too my friend. Take care - Neil.
I suffer from back pain and it shoots down my leg. I've always thought it was my ciatica. But recently I've been waking up in agony. Today I went out with mum and I was having trouble walking almost like I had drop foot. But I don't know if it was drop foot. I was limping and wobbling all over the place. I always have wobbly legs walking down the stairs and I get very dizzy as well at any point in the day ( my father will say that's what u get for laying in bed all day. he is a fine one to talk and he doesn't really understand at all he hasn't even tried to understsnd). I get up from out of chair I'm dizzy I'm just dizzy all the time and my tinnitus is so loud!. Today has been terrible. Even bending down to pick stuff up or bending over to put stuff in oven or just basically bending over to do general stuff hurts! it's constant atm. And I've been having chest pain also right in centre where sternum is its like indigestion. And I wake up with this sometimes and I think how can I have indigestion I've not eaten anything. And it spreads under my rib cage also. The other week my other half let me have a lay in and I had a scare I had an agonising Sharpe stabbing pain in my left breast ( soz tmi ) and it was spreading down my left arm I instantly though omg I'm not having the start of a stroke. I eventually fell back to sleep but it really scared me. I'm noticing alot of new symptoms lately.
Hi Nicola.
Sciatica is literally so painful, its caused by a disc in your lower back pushing on the sciatic nerve, this is when you feel the 'shooting' pain down you legs, its important to get this ruled out as it would be easy to blame MS.
Drop foot tends to be when your walking and you're unable to lift your foot up properly in order to take the next step.. its quite easy to trip up a lot with drop foot as I found out a few years ago when I had it quite bad. I find the wobbly legs stems from the weakness in my back, which I tried my best to describe in my video.
Not sure what the dizziness is, this could well be related to your MS depending on where you have lesions.
I've found when I've been trying to explain how my MS effects me to people, you quite often get a blank look because its so difficult for them to understand how it effects the body. It's always easier to have something visual, but as you probably already know this is an invisible disease. For example, this morning I feel pretty crappy but I look absolutely fine so to the majority of the world I look fine, so I am fine!
My chest pain is literally on the outer edges of my chest wall, sternum and ribs.. its definitely not more internal like stomach area etc. It also never goes completely, its always there.. there's never a day I don't feel it. How would you describe your chest pain, outer pain (sternum/ribs) or inner pain (stomach area).
It does seem like your having a lot of new symptoms, make sure you make a note of them and also date and time them. You can then present this at your hospital appointment when it comes.
Take it easy Nicola,
Regards - Neil
Hi Neil ive been getting this chest pain for about 3 months and my god my back hurts like hell especially if ive managed to get some sleep I seem to wakeup with the bottom of my spine were the leasions are,
I was putting it down to anxiety and stress as it seems alot worse then, sometimes if I try to walk through the whole house as im walking I feel like im being pulled downwards and the pain is so bad that my voice goes and I start shaking and get pain in my wrists,
Ive just bought one of those back supports that you use for cars and computer chairs, I have to say the releif was amazing I would feel it pushing my spine in I just wish I could have that feeling all the time,
Ive had a bad few days my old tablets have worn off and my new ones havnt done a thing so I spent last 2 days sleeping in the day cos I was up all night, I have to say this pain had me crying I was sat downstairs rocking back and forth as my ankle was twisting and everyone was asleep, I was sat in the dark I dudnt know what to do it was that bad, im gonna ring my doctors today to see if they will put the dose up cos I cant handle this pain its a 9+3/4 pain ive put pregabalin back up too I think it was a bad idea dropping 100 ml so quickly everything I looked at was like it was on a slope and I had severe headaches so back on them for now. anyway its 3 in the morning so im gonna try to get some sleep ive got the fan blowing a gale in here and I still cant get in bed cos the duvet is too heavy on my legs and im still at the bottom cos I cant get comfy the other way round, ive got teresas email now so gonna take some pics of my cats for you both and of us so at least you'll both have a face of us when we talk lol oh also does Teresa know her email is still on show I wasnt sure if she wanted to keep it on or not but just let her know anyway, I will email her when I feel abit better, love to you both and huggys for molly x x x ☺
Hi Sue,
I can't stress enough if you haven't already, then you really should get the chest pain checked out or at least mention it to your Doctor. I've been thoroughly checked out and they've ruled out any heart issue, which you need to do also.
I'm no stranger to back pain Sue, as you know from my videos. My back is so very weak and I find I have to keep moving around with gentle exercise to keep it from getting worse. Just to add to the mix, somebody up there must of thought Neil doesn't have enough ailments, let's add Sciatica to the mix.. I've been getting twinges of recent days.
The being pulled downwards feeling I think I can explain, I think it could be weakness in the leg muscles more than likely caused by the MS. If the muscles weaken, they won't function so well (keep you upright) and hence the pulling down feeling if that makes sense.
So pleased the back support is giving you some relief, it's brilliant isn't it when you just find that "something" you need.
Not good that your new tablets aren't working for you just yet, sometimes these medicines do take a bit of time to get into your system, so you have to allow a couple of weeks plus. I did think you dropped the Pregabalin by too much and a bit quick, you have to slowly ween yourself off these type of drugs, it's very important you do it slowly and carefully monitoring yourself through the process.
I can relate to the duvet being too heavy!
It will indeed be nice to finally see a picture of you guys. Email is ok, but it's not quite as 'instant' as an App called Messenger. This is the private messaging side of Facebook.. a lot of people don't like Facebook but to be honest they don't properly know how it works. You only add on Facebook your friends and family, your posts remain private between these people.. so really Facebook is what you make it and it's by far the easiest way of communicating and much more instant.
I hope the pain give you some relieve soon Sue, look forward to hearing from you soon.
Take care,
Neil.
Is it costal chondritis? I get it with fibromyalgia. Its horrible!
Hi Sheila, I think the back ache & weakness (this video) is causes by the MS. But for several years now I've been getting this chest pain that no Dr is able to explain. They thought it was "Costochondritis", and I was treated for it with anti-inflammatory medication but it made absolutely no difference AT ALL. Recent months the pain actually hasn't been too bad at all, in fact it's the best its been for years. I'm positive it's something to do with the MS and is not Costochondritis. Yes, the Fibro is horrible isn't it.. my wife Teresa is being treated for this as she gets so much random pain everywhere. It certainly is horrible. Take care.
mine is there all the time....what do u do about it
Hi Mike, apologies for not responding to you sooner, it’s been a bit of a hectic week for us. I now know my extremely painful back is a result of my condition causing stiff muscles. I take a muscle relaxant called Clonazepam which helps somewhat with this, but it’s also a double edged sword because it relaxes all my muscles. I have significant weakness in my legs, so muscle relaxers aren’t always the best thing for me, but having said that it is the best drug I’ve found so far they helps me.
Hi Neil, I too have this nagging lower back ache or shoppers back as I called it before diagnosis. I Neuro Physio Therepist says it is as a result of my leg weakness and more specifically my hip flexor muscles which she tells are the first to be affected with MS. I have this ache as I am typing now. Standing on one spot makes it ache. I think because my legs begin to feel weak so I shift from one foot to the other. I find myself searching for a chair. So in conclusion I do feel it is related to MS. I too use Tiger Balm which does seem to help. Listening to you now I can hear your pain is different to mine but none the less I felt it might be helpful to share with you. Oh yes - waking in the morning you feel like you've been kicked by a horse. Sitting or being I. Bed all night - it takes a while to get my legs working. Anyway Nice to meet you.
Regards Trev
Hey there,
Shopper back! .. I can definitely relate to that description. Hmm interesting about the hip flexor muscles, I've got a lot of leg weakness but also, especially when I wake up at night and turn over my legs start violently shaking. This is so much so that sometimes I can't stop it, I feel the source of this is in the hips (hip flexors?) .. so this is very interesting to me.
Yes thank you very much for sharing, the information has indeed been very helpful and interesting too. Totally relate to sitting for periods of longer than ten minutes, and yes especially being in bed all night.. everything stops working doesn't it. Kind of takes the body time to warm up and 'get going' again.
Thanks a lot for your comment Trev, good to hear from you and I hope you're managing your symptoms ok.
Cheers!
Neil.
Thanks for reply. I will be checking out some of your other videos. When I stretch either my legs or arms in the morning they spasm like a rabid dog. It makes me smile for some reason. I thought my leg weakness derived from my thigh muscles until my Physio pointed out it was more to do with my hip flexor's. I now can't crouch or put any weight on my legs for any length of time as they weaken to the point of slowly folding meaning I end up on my arse. I now garden using a seat which reverses so I can kneel on it using what were the legs when a seat now as support handles. I look daft I guess but then MS is no respecter of looking cool :) Regards Trev
Hi Trev, yep I can relate to most of what you've said. Also for me when gardening, I cannot crouch for many minutes.. like you the legs start to give way and then I actually struggle to get back up. If it wasn't for my upper body strength, I'd be really in trouble. I use a soft leather large cushion to kneel on in the garden, it's pretty good because it's water proof as well.
Regards - Neil.
You are the first MSer I have come across with the same problems with their legs which in itself a comfort. I try and explain to my MS doctor about this year on year gradual decreasing of my leg strength and how I worry I don't seem to fit into the relapse box in that I don't get specific relapses with recoveries it is more subtle than that. My worry is of it turning into secondary stage. He is going to have me do another MRI in the Spring to check for activity. Thanks for you replies. Trev
Hi Trev,
Sometimes I'd be gardening (hobby) and I might be stretching slightly and bending my legs at the same time, but without realising it I'll be in this position too long. It's then I realise my legs have weakened to the point I haven't got the strength to straighten up, I then quickly realise I'm in danger of toppling over. Sounds familiar?
I understand about your concerns about not fitting into the relapse box, I WAS EXACTLY THE SAME and decided to raise this with my Neurologist. To give you a bit of history, my last major relapse was Feb 2012 and as of Sep last year (2016) I don't feel I'd relapsed since (4.5 years). My Neuro thinks I have, but I told her I believe these were just flare-ups. I know my own body, and that's important to learn the difference isn't it. My Neuro thinks I'm transitioning into Secondary Progressive, but I'd pretty much worked this out for myself also.. if you haven't already check out the video I made on this.
Trev, obviously the Secondary Progressive stage sounds all scary but my MS nurse explained it by saying it's just a label. Also, usually it's very slow and subtle and if I'm completely honest with you Trev if I've got this god dam condition I prefer not to be relapsing and coming down with new symptoms all the time never knowing where I am. I prefer to try and manage my existing symptoms that hopefully aren't changing too much, and try my best to slow down the progress by eating a good diet and gentle exercise. Thing is with MS absolutely everybody's condition is completely unique, as I'm sure you can appreciate.
Look after yourself Trev,
Regards - Neil.
PS: How's Molly? Is that little ol' lady still with us (I hope)?
Thank you for asking Zanne,
She is actually very well, we've not long taken her to have her claws clipped at the Vets.. the Vet examined her and is pleased with her. She's eating really well, and harassing me as usual which is always a good sign she's feeling ok. She turns 19 in Feb !!
Neil.
My goodness ... you should take her to her favorite kitty pub to celebrate!
Aha yes indeed!
I take Tizanidine and that helps with the pains and muscle problems from MS. I take Antivert for dizziness and also Nuvigil for fatigue. You are describing MS hug in this video. I hope you get some meds to help you.
Hi Nordonna, and thank you for your comment and your kind words.
I'm glad that you are getting some relief from the meds you are taking, and hopefully that side effects are down to a minimum/non-existent for you.
As I've had several tests which have all come back negative, I'm slowly coming around to this way of thinking also that it is the MS Hug. However I understand the MS hug to feel like a skin tightening around the trunk area, but this definitely feels musular to me (Ms MS Specialist and I disagree). My theory is the muscles around my Sternum/ribs aren't functioning properly because of the MS and the results is severe pain.
Regards,
Neil.
Hi Neil,
I think you're most likely correct. I've been living with M.S. since 2000. I know you take Pregabalin, which is a variant of Gabapentin. I have found that Gabapentin is much safer and more effective for me. Be well and keep up the vlog. M.S. can make a person feel very alone. Your candor and courage to share has made this M.S.er less so.
John
Thank you John, I appreciate you kind words.. I'm so pleased my video has helped you in some way, lovely to hear from you and take care.
Do you have a physical therapist come to your home? Are you able to do some yoga and/or upper body weight strengthening?
Hi Zanne,
To be honest with you I've not bothered with PS even though I've been referred to them several times.. this is partly due to a past experience whereby they weren't really much help. My upper body strength is very good, the MS only effect my lower body, oh and I have altered sensation across my tummy and pains in the chest, which they say is MS related but I'm not convinced.
I hope you are well.
Neil.
I am well ... thanks much for asking. I've found that if I rely on my own instincts, they prove correct. I had a surgeon who wanted to take my arm apart & put it back together again (I proved later to have frozen shoulder and cup rotator problem) but I took my records to two other osteopaths who gave me Phys Therapy & prolotherapy injections. In a year my arm healed.
Good for you Zanne! I too am very analytical and like to do my own research.. I think you have to now days. I believe far to many people just see Doctor's as these 'God like' people who can fix anything, I've learned that's not always the case, and quite often (like with you) they are wrong.. After all they ARE only human as well. Having sad that, I for one am very grateful to them.. they have saved the life of both my parents over the last ten years.
1st of all I totally understand about your cat Molly. My cat Lived 19 years. It seems like your pain in your chest might be gas? Trying different positions at night proper knees up. Lay on your side. See another doctor if it is related to your Digestive system. Your back sorry you have any pain. Do you have numbness? Rehab therapyIs the best place to find the answer. Wishing you well. There is adaptive equipment wedges that can help . Sorry if I guy you confused with another MS patient that looks so much like you. He is from Copenhagen. I can tell your from the UK somewhere?
Hello Christine, yep I'm UK from Derbyshire.
Pretty sure the pain in my chest isn't gas, it feels more muscular on the outer suface of my chest (sternum/rib cage) rather than a digestive issue. When I'm in bed I have to lay on my back, because to be honest laying on my side makes it much worse. It's a really mystery, but I shall keep harassing the Dr's about it that's for sure.
I have the weakness in my back all of the time, where as the pain comes and goes depending on what I'm doing. It doesn't take much activity to bring on the pain though, which as a rule usually makes the weakness considerably worse too. I think I do have some numbness in my back, but a few years ago back in 2013 I had considerable numbness in my stomach/chest area. This is how I formed my theory that my chest pain is kind of a result of the numbness, in other words the chest muscles receiving random nerve signals caused by the MS, hence the resulting pain (MS Hug). Essentially that's what happening with my legs muscles too, just a different area. Hope that makes sense.
Thanks for the goods wishes Christine, sending them right back to you.
Regards - Neil.
You know I was thinking about your lower back. I get Botox treatments on my tight muscles. I have been gotten Botox in my lower back. I wonder if your pain is from tight muscles? It seems are more mobile and they probably would recommend stretching like lean on your stomach if it is tolerable. Get up on your elbows if that is tolerable. Stretch stretch stretch I use a stretch 3 times a day.
Thanks Christine, Yes I'm pretty sure the weakness in my back is caused by stiff muscles which I'm pretty sure aren't functioning properly because they aren't receiving the correct signals due to the MS. Come to think of it, I seem to recall I'm being referred to Physio (after my recent visit to see my MS Specialist).. I'd actually forgotten about that! They tend to suggest exercises to try and help, so I'll bear this in mind. Appreciate the thoughts, I hope you're keeping ok. Thanks - Neil.
NEAL BRADLEY AIM FINDING OUT I HAVE. THE. SAME PAIN ALL YOU SAID. IAM GOING THOUGH. THIS. ITCHING IS THERE TOO. THE CHEST. THE BACK. I NEED TO GO SEE MY. DR.......THANKYOU. FOR THIS. MESSAGE. NEED TO KNOW. TOO. 🙏
Hi Lucy, ahh you’re very welcome. I’m glad the video proved somewhat helpful to you. Good luck with your Dr’s visit and I hope you get to the bottom of of the problem. Take care.
I realise this video is from a while ago and I hope your back is feeling better by now. But the way you described your back issues, particularly not being able to walk right when you get up, pretty much describes how I felt a year ago. Except I also had pain. And the pain was becoming unbearable and it was spreading to my legs. Anyway the reason I mention it is because after some research I became convinced I was displaying signs of vitamin D deficiency, something not uncommon here in the UK because of the lack of sunshine. That, coupled with the fact that I hadn't been getting out enough, it all made sense, so I decided to take vitamin D. After 2 weeks of daily 2000 IU I started to feel significantly better. After 3 months the pain and all the strange sensations in my back and legs were gone. Have you had your vitamin D checked recently? Perhaps it's something to look into...
That’s amazing.. I’ve not had it checked but I do take Vit D supplements at night. I think I’m taking 5000iu tablets, I’d have to check the bottle. I’m also taking Vit b12 and Calcium & Magnesium in the hope they will help.
So sorry to hear it's not helping any... So you think it's MS related?
Pretty sure, I think the MS is disturbing the signals to the muscles in my back causing them to malfunction and stiffen up. That’s my theory anyway. I do however feel taking the supplements helps though. I appreciate you making the suggestion regarding the Vit D, thank you.
Such an unpredictable disease. Hard on the body AND the mind. I admire your strength. Thank you for making these videos and sharing your story.
Thanks you, for your kind words😊
The Dr's here doesn't care period i live in Columbus Ms where if you've had a bout of depression that is the First thing they think is wrong!! So frustrating so when you're telling them these multitude of symptoms that you're experiencing they automatically sum it up as you're depressed!! So my heavy legs..my facial pain the itching the burning of my toes slurred speech and so on is Only from depression?? I cannot!!
Hey Natasha, you’re not on you’re own there.. so many people have written in on my channel saying very similar things. I’m no Dr but like you, I honestly can’t see how they come up with a diagnosis of depression. So very sorry to hear you’re struggling.
Thank you for replying i wish you many blessings on your journey with MS...
Thank you Natasha, I wish you luck with your quest to get to the bottom of all of the symptoms you describe. Hopefully you can find a Dr that knows what they’re talking about. All the best.
Neil, your Molly looks like she'd kick my 5 cats arses, mine only have to hear the postman and they are on their tummys doing army crawls across the floor and around the corner before you can blink mine are quite large too but are a bunch of pansys, mine like Molly are very vocal we only have to say bedtime and they all run off moaning at us and doing chatter noises, oh as for the backpain I use tiger balm and a marble roller ball that I got from Amazon, lately it feels like ive had someone kicking my spine all night and I have leasions on my spine and the pain is were the damage is, it feels weak too, ive just got myself a pair of crutchs so I can keep upright abit more as I was finding as I was trying to walk I was slowly bending over to the point of falling over head first, ( not very attractive) lol, oh if you get tiger balm dont do what my fella did and rub your eyes afterwards aww the tears, bless ha 😁 take care,
Sue x keep doin the videos they are great.
Glad you're still enjoying the video, Sue FIVE CATS!!
Thanks for the Tiger balm Tip, oh and if I do rub my eyes before washing my hands I'll be sure to contact Dave for advice lol Ahaha. ;-)
Yes, same as you Sue.. get loads of back pain but more so WEAKNESS.. night times are terrible for me and the back. I've always been a person that falls asleep on my back, my preference but now I can't and have to lie on my side which I don't find so comfortable.
what did u do to relieve the ache
Hi Andrew, the pain is due to stiff muscles in my back. I take Codeine which helps a little, but I’ve recently discovered Diazepam helps too as it’s a muscle relaxant. However you have to be very careful with Diazepam as it can be addictive if used incorrectly.
@@NeilBradleyMS thanks i use lirica and antidepressant but i dont find it works for back pain (stabbing and tightness)
andrew i I’ve been on Lyrica since 2012, but recently realised it was doing nothing for me when I kept forgetting to take it, and noticed no difference in pain. So about three months ago I stopped it completely and haven’t taken it since.
andrew i Lyrica is a nerve pain killer, you may get better pain relief with an opioid type pain killer. You’d have to speak to your Dr about the best one.
@@NeilBradleyMS i did and he told me thats the best
I have symptoms of tingling burning itching so on...i feel my skin have sunburns... did 3 mri’s with contrast 1 each year apart... all came perfectly fine.... i have a buzzing in my leg... i will have some analyses next week and another 3t mri cervical and brain with contrast substance! I had electromiogram and VEP which came perfectly fine! Doctors say could be lack of vitamin b12, or anxiety and psychosomatic disorder, they say it is not multiple sclerosis... in three years apart something wld have come in the mri, i mention i did mri in 3 different places, one of them in germany! Idk if anxiety can give suck burning tingling numbing sensations...can t stand the feeling of burning when even soft clothes touch my skin... even my fingers burn:((( i have same feeling on my cheeks as well.... chest , hands, legs, feet, fingers...
Hi Alice, I’m really sorry to hear your going through all these symptoms. I’ve heard so many times that lack of Vit B12 could be a contributory factor. I do take it as a supplement at night, I just try everything I can to minimise symptoms. I’m stunned that you’ve got all these symptoms yet the scans still come back clear. Do you have any muscle weakness or problems walking etc?
Incidentally, one of the very first things for me was I hated the feeling of covers on my legs, still do .. material of any sort is quite often painful for me. My feet burn, so do my legs and hands. Does make you wonder doesn’t it. I’ve never heard of anxiety causing burning sensations.
Neil Bradley no, no muscle weakness or pain and no difficulty walking, thanks God
That’s a blessing Alice 🙏
Neil Bradley yes, true! But till i get my 4th mri and see that all is fine i am still concerned. If this comes out fine after 3 years , means it is not MS for sure..... Till then i keep my fingers crossed....
+Neil Bradley sorry i bother you again... i am just desperate as i get no answers... can you please tell me first time you had an mri, first time it did come something on it? Any change ? They could see on the mri that something is wrong?
it is costochondritis trust me it is so debilitating.
ALL these symptoms described by you, are absolute typical MS related. The chest pain is actually a misnomer, as in fact, is muscle pain. Most of the pains are muscle related. Muscles do not anymore have enough information from the brain, hence the whole spectrum of symptoms. The so called "MS hug" you are misinterpreting as chest pain. No one can provide any real help with the array of symptoms MS brings. I've gotten used to the "idea", which might be hard to accept in early stages and most of all I do not detail my symptoms with anyone, as I know for a fact, it does irritate and annoy people. It is a "take-it" or "leave-it" sort of a deal. Read the literature, explore other cases of MS, inform yourself as well as you can on multiple areas of the disease....and...deal with it, that's pretty much the bottom line of it. :)
Hi Laura, thank you so much for you comment (and sub)
You have basically just put it in a nutshell what I've been trying to explain in my video with regard to my chest pain theory. My theory was if MS can quite clearly effect the muscles in my legs and subsequently cause pain and problems walking, why can't it have the same effect on the muscles in my chest? Especially as I've had numbness and altered sensation (still have) on my stomach area. The muscles in my chest are just reacting differently to the to the random/broken signals and don't know what to make of it, so their reaction is pain. I put this theory to my MS specialist but she didn't agree with it, but I think its very plausible. I find that there are certain things I do which antagonise the pain, like typing (using both arms), driving (again both arms), sitting in the upright position for long periods of time (as opposed to leaning back on a settee). Having said that I can simply wake up in the night with it painful - and the pain is phenomenal!
Another interesting comment I had from a Chiropractor in New Zealand is, he believes it is Costochondritis but it isn't properly recognised or treated. He goes on to explain that the ribs hinge on to the Sternum, but they also hinge around the back on to the spine (large hinge). The hinge at the back stops works so efficiently putting pressure on the hinge at the front (sternum) and this can cause the pain I am experiencing. (I'll try and find the comment)
Thanks Laura, I'm with you there on the bottom line :) I have been struggling coming to terms with it, and I do find that explaining my symptoms to people difficult.. I get the feeling it just goes completely over their heads even though I explain in detail. Some are really interested, but others just move on quickly to another subject.
Regards - Neil.