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Is it possible to have MS without numbness?

Im just wondering whether numbness is a key factor re: MS diagnosis? I fit a good number of the symptoms as I await brain scan but other than at night my arm or leg going completely numb - I don’t experience this at all.

Ive read through several posts and it seems to be a significant part of MS. I’m get the sharp shooting pains, muscle spasms, cramps, tightening, twitching real bad and recently little tingly face, extreme sore stiffness, but no numbness.

Terrible off off balance sensation with weird feeling in my left leg. But no numbness.

I’ve read that this often the reason some end up in hospital leading to a diagnosis…

Thank you.

Hi again,

Strange as it may seem, symptoms are NOT the basis for a diagnosis.

Technically, diagnosis CAN be made on symptom history alone - before we had MRI, VEPs etc, it was the only way. But these days, it’s vanishingly rare, and I think a diagnosis based on symptoms alone would be considered unsafe.

MS is such a variable disease there’s probably no symptom - including numbness - that everybody with MS always gets.

It’s a very common symptom, but not necessarily universal. I was finally diagnosed with MS following an episode of profound numbness in my feet (lost not only sense of touch, but even pain, and hot and cold).

However, I believe I had MS for a number of years before that, but numbness had never been a big feature. Perhaps a slight numbing of my intimate area about one year before the really dramatic numb feet thing, but it was so subtle I wasn’t even sure, if that makes sense. I.e. sensation seemed altered, but wasn’t lost altogether, so it was hard to be sure what had changed, or even if anything had.

Please, for your own sanity, stop trying to self-diagnose from symptoms. There are more than 100 conditions that can have similar symptoms to MS, so it’s not a reliable way to diagnose, and that’s why it doesn’t form part of the official diagnostic criteria.

Diagnosis these days is very heavily weighted towards clinical evidence, such MRI evidence of lesions, rather than reported symptoms, which can vary hugely, and are not unique to MS.

Tina

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Thank you. Having been put on a watch and wait by a neurologist years ago I have dismissed and not really read up about MS. The difficulty lies with knowing something is not quite right over a period of years and eventually getting fed up being suggested there is nothing wrong with you. I am not self diagnosing. I have only just started reading up more thoroughly about MS as it is being considered again. If anything I’m ruling it out because there seems to be symptoms that don’t fit like the numbness at the moment. But by reading up I am at least informing myself prior to further neurologist appointments. Little things like asking for copies of reports were helpful in another thread.

I also thought the diagnosis was based on symptoms as well as MRI etc but the symptoms are considered with regard to frequency, number of symptoms present, episodes and severity.

So I was just wondering if numbness was a main contributing factor in diagnosis.

But then as you have suggested everyone is different and perhaps the route to diagnosis is heavily weighted towards scans. So in that sense I am assuming if you don’t have lesions then you don’t have MS?

Anyway have a good day. Maybe I’m slightly confused about the diagnosing process.

Regardless of symptoms, is highly unlikely you would get a diagnosis of MS in the absence of detectable lesions, yes.

Frequency and number of symptoms are NOT part of the diagnostic criteria, as other conditions could produce similar symptoms, so this neither proves nor disproves MS. Besides, number and frequency of symptoms are highly variable, even in people with clinically confirmed MS. Some people are virtually symptomless - especially in the early days - others have a large number of symptoms, a lot of the time. So trying to work it out from that leads nowhere.

You are more than slightly confused about the diagnosing process, as diagnosis is according to the McDonald Criteria, which you can Google if you like. A notable feature of the McDonald Criteria is that symptoms aren’t mentioned at all. There is no symptom that’s essential for diagnosis. Very occasionally, somebody with ZERO symptoms could be diagnosed with MS. This would typically be if characteristic lesions were discovered incidentally, during an investigation for something else. It’s not common, but it does happen.

Some cases of MS are discovered only post mortem. The person hadn’t been investigated for it in life, because they had few or no symptoms. In such cases, it’s not usually the cause of death, just an incidental finding. So it’s estimated a few people are always going about with MS who don’t know, and may never know. It doesn’t always create serious problems.

Tina

Okay thanks. And thanks for confirming Im confused blush

That is interesting the last part. Because I just assumed if you have lesions then you would suffer symptoms. But you say its possible to be fine.

I apologise for my ignorance. As I said I came on here because I am struggling with my symptoms and MS has reared its head again after a consultation.

You have cleared up that MS is diagnosed basically via scans/detectable lesions. And symptoms do not have to be present.

Thank you.

I am recently diagnosed with RRMS and according to the neurologist have most likely had it for 20+ years.My symptoms are minimal and have remained the same for the last couple of years.

I was only when I went to the GP about them any investigations where carried out and the GP was surprised with my diagnosis as was I.

I have not experienced numbness at all.

Yvonne

Thank you for that bassetmum. This all helps me understand a bit more. I imagine then it was the diagnostic imaging and tests that led to your diagnosis. I imagine though your symptoms were enough to affect you that tests were asked for.

I just wrongly presumed that it was the symptoms that were key - leading to a diagnosis. But it seems this is not necessarily the case.

Appreciate your input thanks.

I actually went to the GP as I have a tremor in my left hand which had got worse and started to cause problems so my husband made me go.I do not like Doctors but realised that it needed looking at.THe doctor put me on Propanolol to see if it helped then referred me for a CT scan.

Propanalol did not help and CT showed abnormality so was referred for MRI and I also mentioned the problem that I have with my left leg which I put down to getting older.I am 59.

MRI showed definite lesions so was sent to Neurologist and had various tests on reflexes etc. Neuro confirmed MS and said that I have probably had it for many years and showed us the MRI which had one huge white blob evident and several small ones as well.

My hand tremor is much the same but at the moment the leg issue is playing up but I hope that it is rebelling because I was on holiday for two weeks in a resort with lots of steps.

Thinking back I did have lots of pins and needles in my hand a few years ago but thought nothing of it.

Thank you. It is interesting the different routes to diagnosis whether MS or something else… It truly is a story and a journey in itself. Hope you have a great weekend.

Obviously, usually there would have been some symptoms, as something would have triggered the person to go to the doctor’s in the first place, but very occasionally, MS is discovered in somebody who hadn’t been bothered by it, and was being investigated for something else altogether.

There is not a direct correlation between lesions and symptoms. Some lesions - possibly the majority - are known as “clinically silent” - that means they do not have any obvious corresponding symptoms. That is at least partly because the brain is very good at compensating for any areas of damage, so if it can simply reallocate the work, to bypass the lesion, it will do. It can do this quite a lot without any noticeable impact.

However, if the brain is unable to reallocate the work, that is when you will get a symptom, as the functions that used to be done by the area where the lesion is now aren’t being done properly - or at all. :frowning:

Tina

Is restless leg syndrome associated with MS? Having trouble tonight. I get this every few weeks.

Hi Marmitegranny,

It can be, but just like the various other symptoms, it’s not proof one way or the other, as lots of people get RLS without having MS at all (and lots of people with MS don’t get RLS).

Did you know you can start your own topics, without having to reply to someone else’s? I just noticed that your posts are getting a little bit lost, because you’ve added them to a conversation that was about something else.

Your posts will get more views and - usually - more answers, if you start a new subject.

Of course it’s not wrong to join in an existing conversation - especially if your issue is the same or very similar. But people seeing this thread will assume it’s about numbness - they won’t realise there’s a question about RLS buried in here.

So if you had begun a new one with “Restless Leg” in the title, say, it would attract more viewers who have something to say about restless legs (not numbness).

It’s the “New Thread” button (towards top left, just under the search box) to begin a subject of your own. Give it a name that reflects what you’re asking (to catch the eye of people who know about that), and you’re off!

Tina

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Thanks Tina

Yes, I am completely new. I did put a post on the other day. Feeling rather alone at the moment. I hoped this might help. I don’t get to even see the neurologist until 17th November. My doctor immediately referred me when I gave him all my symptoms. I am sure my husband thinks I an imagining everything. The restless leg thing came from an article I read, I think on the Telegraph website. I hadn’t realised there might be a connection with that as well.

I’m sorry you didn’t get replies to your earlier post. It’s probably just because you attached it to an old, “sticky” post (“stickies” are posts with important information that the mods attach permanently to the top).

Although the stickies are important, most people don’t visit them once they’ve seen them, as they may have been there a year or two, but the information doesn’t change. So if you happen to reply there, most people won’t notice, and you might not get many (or any!) replies, as you’ve discovered.

That’s why it’s better to start a new subject of your own, if you want to be sure of being seen.

I expect your husband rather hopes you might be imagining everything, as, from his point of view, that would be a good outcome, wouldn’t it? I’m sure he would prefer to put it down to “being silly”, than to anything actually being wrong. Don’t be too hard on him - I’m sure he’s not being deliberately unsympathetic, but he would like it to be “nothing” - we all would!

Believe me, I spent years telling myself I was just “being silly”, because that’s easier than the alternative (that there might be something wrong), isn’t it?

Try to stay open-minded about what it actually is, as more than 100 conditions can have some similarities with MS, and some are as simple as vitamin deficiencies.

Tina

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I have had Ataxia, birth defect, fell most of life,first concussion/K.O @ 12. SINCE 2009, 12 CONCUSSIONS , 1 K.O. 2015, whiplash conc.Then,multiplicity of complications, 3 yrs now, 2 days ago seizure in bed, Pain shot up left side of face, my left eye, into head. So dizzy, now,even more than b4 ,have biplopia, neuro opthamologist said," you have brain damage, i dont know where, but thats what hurt your eyes".Mom had M.S. My PCP knows this, not even 8 neurologists, would give me the proper brain scan to find out if, Stroke, epilepsy, ms i have not a clue, but something is very wrong, how to say to PCP, I WANT THAT TEST?