Hi everyone, Could I please ask for a bit of insight here? Is is possible for symptoms such as numbness to disappear completely, despite suffering for weeks during a relapse, only to return during another relapse? A neuro said to me that numbness cannot come and go. Maybe I just don’t notice it being there when I am not either relapsing, or feeling under the weather. But when I do feel ill due to lack of sleep, a virus or another relapse, these numb bits are back. What does everyone else here think? J x
Hi there, I’m by no means an expert, but I had numb feet during my first relapse and the numbness did wear off with the vertigo which was the main problem. I do get numb big toes sometimes and I often wake up with a numb left hand which wakes later in the morning, so for me it does come and go…
Hello
I’m primary progressive. I get numbness, that’s not there all the time.
Was it a specialist neuro that told you this, or one that knows a bit of everything.
If they don’t know what causes MS, how do they know that numbness can’t come and go?
Take care x
Hi J,
Numbness certainly CAN come and go! During the relapse that led to my diagnosis, my feet went completely.numb.
They’re not numb now, although I would say they have a tiny bit less feeling in them than when I was completely fit and well. But for all practical purposes, the numbness has gone.
I even remember realising it had gone, or was going, because I realised I was standing on wet carpet (not from anything horrible - just spilled water). Contrary to the usual reaction, I was absolutely delighted to find I was standing in the wet, because for months, I wouldn’t have been able to tell.
“I know this carpet is wet!” was a wonderful feeling.
I also get temporary numbness of my hands at night, which goes away as soon as I’m up and about. That’s a different kind of coming and going. I’m not having a relapse each night, and recovering in the morning. It’s just an ongoing symptom.
Tina
x
I thought that symptoms can come and go but old symptoms are likely to reoccur during relapses. It’s certainly been that way for me since a nice eight week relapse at the end of 2012 where the whole of my left side was affected. The three relapses I’ve had since have all been the same and ever since the beginning, it has always been my left side starting with double vision in my left eye.
I believe it’s all to do with the thought that myelin repairs itself at the beginning of the disease, hence relapsing-remitting, but then once there is any kind of damage, it’s likely that will flare up again.
I could be completely wrong though! 
I’ve had permanent numbess/tingling in both my hands since my second relapse in 2001. They just never recovered. I can still feel, if that makes sense, but it’s like having a very thin pair of gloves on. I’ve forgotten what ‘real’ feeling feels like now 
I have read that extremities such as hands and feet can be the first affected.
I’m no expert (I just have my version of MS ), but last year I had a relapse and gradually went numb from the soles of my feet to just underneath by ribs. It has improved considerably, and now seems to move around,especially when I’m tired or overheated.
I could comment further about your neuro, but I shall resist, and just say that only you know how you do/don’t feel.
Mags xx
Thanks for all your replies everyone. I thought I was correct in thinking they could go and then reappear during further relapses. It’s was a general neuro, tbh I thought he was a bit of a pleb with the stuff he came out with, so I am a. It naffed off I didn’t stand up to him and argue what I thought was the case, but then again, I doubt it would have done any good. Thanks again all of you, at least I know I am not going completely doolally lol. J x
Ps, funnily enough Tina, my hands go numb at night too, so much so they wake me up thinking I have been lay on them. Then spend ages trying to get the feeling to come back, realizing that it’s not going to happen, so try to ignore it and get back off to sleep :-/
Hi again,
No, it’s not lying on them - ot at least, if it is, that’s only part of it. It’s the underlying MS. Some here have suggested sleeping with your hands between your knees, as keeping them low (in relation to the body) seems to help.
It’s not the most natural position to fall asleep in, and I usually find I have moved in my sleep anyway, and messed it up. But there does seem to be something in it that they don’t go so dead or tingly if you keep them low.
Tina
x
I was told by one that ‘you don’t get loss of sensation with MS’…really? …I refuse to see some of them now I always ask who I am actually going to be seeing, when I get an apt. for 'neurology clinic’as it is a complete waste of my time and theirs when it is ‘one of the registrars’ .
That’s absolutely appalling, Maude. Very hard to have faith in anyone ignorant of such basic facts. Even a layperson using Google can discover it’s a common symptom - which is what brings so many worried Googlers to the forums. If it was some rather obscure symptom, not often reported, ignorance would be more excusable.
But it must have been literally his first day or something! Anyone who’d seen a number of MS patients would notice a lot of them report numbness or loss of sensation. How many would you need to see, before you detected a pattern? Even if you hadn’t read the part of the textbook that covers that!
Mind you, it was only relatively recently accepted that pain is part of MS - or can be. Goodness knows how many were fobbed off with the insistence their pain must be imaginary, because: “MS doesn’t cause that”.
Tina
I will give that a try Tina, thanks. I try to fall asleep in all manner of positions to make sure my hands are nowhere near me lol. The worst thing I have experienced right at the beginning, was when I woke up and thought my arm was beside me, only to find it on the bedside table, completely numb. I had to move it with my other hand and nearly went hysterical, frightened my poor husband to death lol. It has happened once more since then, but my hands are pretty much most nights now. The problem is during dx, it’s getting past all the ones who know bits about ms, but specialise in things like epilepsy and are blinkered by their own speciality instead of being to be able to access the ms specialists. Frustrating at the very least. I guess I will just have to keep chipping away as best I can J x
I’m under a rheumatologist for psoriatic arthritis. At my last appointment, I questioned if my diagnosis could be wrong, has I have never shown the classic outward signs of the disease. He said you don’t get pain with ms…at that point, I gave up. I expected better from a consultant, even if he’s not Neuro trained. Noreen x
Was he an older guy, Noreen? If so, he may have been simply parrotting something that was still a prevalent view, when he was a medical student.
As he didn’t pursue neurology, he may not have encountered anything since that would update him on the latest thinking.
Tina
x
Tina, not as bad as being fobbed off fot years by GPs with ‘well you drive a small car’, my answer to that was ‘well, I’m a small person’ and 'it may be gout’and my answer to that was ‘and it may not be, so what else may it be?’ I had years of this about 14 then just happened to see the P/T 2 mornings a week doctor who asked straight away ‘has anyone mentioned MS?’- before any tests, granted, she lives next door to the first neurlogist I saw,(very good friends which is who she referred me to) who pretty much told me what she expected to see on my MRI! she also told hubby whilst I was still in the exam room ‘This is a text book case of MS’ - shame she wasn’t proved wrong, but still a bit previous, I got my results from the GP(not the P/T one), had a phone call to go in and speak to her about the results, never seen anyone squirm the way she did, giving me the news,knowing full well how many times I’d been fobbed off and treated like a nuisance and hyperchondriac! So I don’t have an enormous amount of faith in any of them.
I haven’t been on here for a while and was completely amazed by the idea that a neurologist (even a general neurologist) could be unaware that numbness is a classic symptom of MS and that all symptoms of MS can come and go! Aren’t those two of the most basic facts about MS? I have seen some pretty poor neurologists in my time with MS but your guy makes them look like experts. I would keep as far away from him as possible, if I were you. I hate to be militant, but you might even think of putting in a written complaint about what he said to you. He shouldn’t be allowed to spread this kind of misinformation - some people with MS might think he knows what he’s talking about …
I also end up with numb arms and hands at night, takes a while to come back to life some mornings. I used to get ulna nerve entrapment at night when I slept with my arms bent, but this feels worse.
Interesting Puddinglover. I previously had ulna entrapment in my right arm, and suffered the same issues at night - numb/pain/pins and needles and burning in my right pinkie and ring finger, every single night.
I am undiagnosed with anything as of yet, still on the investigation train, but since my last “episode” (I refuse to say relapse at this stage!) started, my left hand has gone completely numb every single night. Completely different to the ulna nerve problems, where just half of the hand went numb, this is like I am wearing a glove of numbness. Most bizarre. Makes no difference when position I sleep in either. Annoying!
Interesting Puddinglover. I previously had ulna entrapment in my right arm, and suffered the same issues at night - numb/pain/pins and needles and burning in my right pinkie and ring finger, every single night.
I am undiagnosed with anything as of yet, still on the investigation train, but since my last “episode” (I refuse to say relapse at this stage!) started, my left hand has gone completely numb every single night. Completely different to the ulna nerve problems, where just half of the hand went numb, this is like I am wearing a glove of numbness. Most bizarre. Makes no difference when position I sleep in either. Annoying!