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Need advice from people with experience

I had an episode of Optic Neuritis about a year ago, and then a few months later I had tingly feet for about ten days. I eventually managed to see a neurologist at the start of the summer, and he said that the feet thing could well be a symptom, but he wasn’t prepared to classify it as one because “it’s usually hands and feet at the same time”.

I had an MRI scan shortly after seeing the neurologist, and got the results in early September (very long wait…). The neurologist told me the results were “consistent with MS” and that “according to one study, there’s an 80% chance you’ll develop it in the next ten years”. But he said he couldn’t diagnose me with anything until I had more symptoms.

Everything then went quiet for a few months, apart from a seriously weak bladder (which I’ve had for ages so could be unrelated). About two weeks ago I noticed that my right side had gone a bit numbe, from just under my chest to the middle of my thigh. Not completely numb - just very reduced sensation. I phoned my GP (I’m studying in a different city to where I’ve been seeing doctors), and she said to call her back if it persisted. Again, she said she wasn’t sure as it was “usually the extremities”. I haven’t managed to speak to her, despite calling her back, but hoping to tomorrow, although I know she won’t have much useful to say, because it’s not her field.

Now, as of today, I have a weird feeling in my right hand and foot - not sure how to describe this really other than a sort of thickness/stiffness. When I press my thumb against my index finger it feels very strange.

So my questions are:

  1. Was the neurologist right about the foot-tingling? Is it usually both at the same time?

  2. The bladder thing - could that be a symptom? I need to go to the toilet way more than other people it seems, and often I’ll go but still have a sense of needing it, which matches things I’ve read. However, it’s quite ongoing, rather than episodic - is this normal?

  3. Is my GP right about it being in the extremities? Have other people experienced numbness in the torso area?

  4. I’m pretty sure I have MS - the scan, plus the ON and all these other things would be too much of a coincidence. So will I get a diagnosis from the neurologist now? And what would a diagnosis even mean? Should I pursue that?

Anyone who could answer any (even just one!) of these questions would be very much appreciated by me. I’m feeling quite scared about the future, as well as confused about the medical advice and information I’ve been given, and while my friends are reallys upportive, they obviously don’t really know what to say. I’ve never posted on a forum before in my life so sorry if this is too much! Hope someone can help xxx

Hi Katie I’m a bit of novice MSer (8 years symptoms, diagnosed at Christmas) so can’t really give you much advice and don’t want to give you wrong advice! But, my tingling is always my feet (travelling up my legs) but never in my hands. I’m pretty lucky, apart from dropping things and collecting scars through clumsiness, my hands are always ok You’ll get some better more thorough help from some of the fantastic people on this forum soon :slight_smile:

Forgot to say I’ve also had a numb torso (travelled up from my legs) and two bouts of ON

OK, thanks! Sorry to her about your diagnosis, can’t believe it took 8 years to happen.

I can’t answer everything, but I get problems in my left hand completely independently of my feet. Eight months between episodes in each. So no, I don’t think it would need to be both at the same time! I also get problems in one foot at a time as well as together. One of my first symptoms was a numb section on my tummy, which spread across and up towards my boob. It’s kind of like the skin is numb - scratch it and it feels like someone is gently prodding me! It’s been my tummy, side and thigh at various points, and more recently my entire right leg! I do get the same bladder issues, but not continuously. But then everyone is different! I would keep a diary of symptoms, go back to your neurologist and take it from there. Only a neurologist can diagnose MS, so speaking to your GP is kind of useless in this case! Personally I would rather have a diagnosis than not as at least you can make plans and get the treatment and support needed. There are a few practicalities with a diagnosis (informing the DVLA and car insurance people, etc.) but day to day life is still the same whether you have a label or not! Take care x

Thank you. MS was never mentioned and I didn’t think to Google the symptoms. Also the symptoms didn’t really disrupt my life too much. So in my case it was an ‘ignorance is bliss’ situation for those 8 years. Just figured I was wired a bit wonky, and I suppose I was right! Hope you have some answers soon

i was diagnosed 2 months ago so still fairly new, but i had numbness all up one side of my body for months, which has now gone to the other side and goes from my belly button around to my spine and frm my hip to my lower back. have also had tingly/numb feet and numb fingers for months…not sure if this helps. i agree with emma, keep a diary of your symptoms as it’s so easy to forget and overlook something important. good luck and i hope you get a solid diagnosis soon as i know how horrible it is to feel in limbo x

Oh my goodness, your GP and neuro do not seem to know very much about MS!

  1. No, MS does not usually affect feet and hands at once. That is utter rubbish!

  2. Yes, the bladder thing could be a symptom. Bladder problems (frequency, urgency and retention) are common in MS. You should check that you don’t have a UTI (urinary tract infection) though. Not only would this cause the problems you describe, it could bring on other symptoms.

  3. No, MS does not usually affect the extremities. It can and does, but MS is a disease of the central nervous system and can affect literally anywhere, including bits of the torso.

  4. I do not understand why you have not already been diagnosed with MS, however let’s give the neuro the benefit of the doubt and assume it’s correct (although the hands and feet comment make me suspicious that this neuro is not an MS specialist!). The diagnostic criteria are to have had more than one attack (which you have) and to have more than one affected area of the nervous system, usually demonstrated by having lesions in at least two MS-typical areas on MRI. Why is it worth pursuing a diagnosis? Tbh, there are many reasons, but the most important ones are to get access to support for your symptoms and to get the protection of the Equality Act if you are in work and need support. Because your attacks seem to be relatively mild, you probably won’t be eligible for disease modifying drugs (DMDs) that can reduce the effects of MS, but these are only available to people who have been diagnosed as relapsing remitting MS. If the neuro gives you the runaround this time, ask for a referral to an MS specialist. In fact, you should do that anyway. Not all neuros are equal when it comes to MS! (E.g. not all neuros can prescribe DMDs!)

Diagnosis is a very scary and unsettling process. However, MS really is NOT the end of the world. The vast majority of people with MS live long, full and happy lives and while it can be tough at times, life really still can be good.

Karen x

I think Karen has hit the nail on the head. My first symptom was pins and needles in my hands. I now have this permanently. Ive experienced some weird feelings in my feet but not consistently with my hands. Follow karens advice hun and it doesn’t mean an unhappy life. We all have good and bad days. Key is to keep positive regardless. Good luck hun x

I can give you the name of a very good neurologist at the National Hospital for Neurology and Neurosurgery in London, if that’s any help (obviously depends where you live). You can see him on the NHS as long as your GP agrees. You definitely should try to find a better neurologist - from experience, there are plenty of useless neuros out there, who know nothing about the latest drugs. Some of these can change the path of your disease (Alemtuzemab sp?) if you take them early enough, so it’s well worth seeing someone who will give you a diagnosis and who knows what they’re doing.

I thought alemtuzemab was not being given at the moment. Can some neurons still offer this treatment.

Sorry neurologist not neurons x

Thank you all so much! Like I said, I’ve never used any kind of forum before, and I’m amazingly touched that complete strangers would take the time to write such thoughtful and helpful responses. I’m really reassured by the suggestion that the neurologist I saw doesn’t quite know what he’s on about, as that’s what I suspected after the hands and feet comment! I have a very good relationship with my GP so I’m going to speak to her today and see about getting referred to a specialist. Once again - thanks! This has made things a lot clearer for me, and I’m definitely going to try and wrangle a diagnosis out of these damn doctors…

hello

your experiance sounds a little bit in part to what i went through although i had a family history of MS. i had symptoms from a teenager and at around 23 or 24 i got optic neuritis and the doc and neuro wernt diagnosing me for years i think they do have to have both, history, brain scan showing possitive or lumber puncture and a relapse of significant symptom to finally dx you.

id say although optic neuritis is not really always a symptom of ms its self in my personal experiance it was a first symptom.

i would try to live your life the best you can and think hard about if you really want to know you have ms or not. because i battled for a dx for years and to be honest now wish i didnt know. i guess is good knowing but having it there not always great.

i hope you get the answers you need and im sorry i cant be of more help x

love moo

Hi Katie. I was diagnosed about 5 years ago following a bout of Optic Neuritis and an MRI Scan. At about the same time I developed ‘tingling’ in various places including my right arm - but not my left one, nor my feet. Since then it has progressed a little and now its my right leg and to a lesser extent, right arm that experiences the numbness, tingling and sometimes lack of coordination. I have never ever heard anything about MS affecting hands and feet at the same time! Certainly that was not my experience. Yes I have experienced numbness in the torso area. In fact it was more than numbness: there is something which is referred to as the MS hug. Basically a feeling of tightness in the torso. And yes on going to the toilet. Its not so bad now but I went through a fairly long period ( a year or so) of feeling a great need to go but then found that I couldnt/didnt need to (some car journeys wer ‘interesting’ and pucuated by a need to stop the car at the nearest petrol station, cafe, hotel or secluded field). I dont know if this wil help but I found that by learning to relax a little I could get a better feel for whehter or not it was a genuine need for the toilet.

In terms of what would it mean: you should get access to some disease modifying (slowing) drugs - and there is a very good book ‘Taking Control of Multiple Sclerosis’ by Professor George Jelinek.