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Question about Symptoms could be MS

Hi, I am new to the forum.  I have had odd symptoms for years, probably 15 years.  I've had and still have muscle twitching in random muscles all over and feelings of pins and needles occaisionally in my right shin and top of foot.  I sometimes have the feeling that there is a bug crawling on my leg or arm.  I have vertigo occaisionally.  I've had the feeling that I have to think about walking and think about lifting my feet up as my legs feel very stiff and tight.  My hamstrings and quads are very tight all the time for no reason and after I work out I feel competely sore and exhausted.  I've had two brain MRI's over the years with dye contrast and they've come back clean.  I've also had EMG and nerve conduction tests that were clean.  I've met with 3 separate neurologists while symptoms were occuring and all three had no diagnosis.  I'm nervous because I'm really having trouble with walking as my legs are so tight and everything feels off when I'm walking outside.  When I'm in my house it's not so bad.  Running feels almost impossible.  I don't know what to do now if I go find another neurologist and go through more testing.  I'm not falling down or tripping.  I just feel like I have to really pay attention while I walk and its awful.  I'm a tennis player and I'm still able to play tennis, but running isn't the same... it's all much more difficult.  Does this sound like MS?  I appreciate feed back.  Thank you

Hi Anon, hmmm…well yes, it could be MS…but then it could be lots of other things too.

Of course there IS something going on and these symptoms indicate that.

I had many MRIs, LPs, EMGs, other tests and oodles of bloods taken too.

It doesnt help to keep having tests with no results…it makes us wonder if we are imagining it all.

But I know I wasnt and I`m sure you arent either.

It took 22 years for me to get a definite diagnosis, after being seen by 17 neurologists.

That last one is a neurologist who specialises in movement disorders. He knows his stuff. He had me in the Walton Centre in Liverpool for almost a week and got to the bottom of it all.

I hope you dont have to wait as long.

Boudsxx

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I have similar symptoms. Have you had a scan of the spine? I can see you have had 2 brain scans but the spine is also key if investigating MS. I had everything and they found nothing. I have been given a working diagnosis of FND. FND is fairly common diagnosis for people experiencing these types of physical symptoms so you might want to look it up. When my scans and blood work came back clear my symptoms started to improve (although they are still there). I think all these types of conditions are effected by stress. I know it is frustrating but you should take a degree of comfort that everything has been clear to date.

Hi Jonny316,

This is most helpful. I have never heard of FND. I may very well have it. None of my symptoms fit into any sort of pattern of diagnosis. I thought for awhile I had a mild form of fibromyalglia. But I don’t have severe pain nor do I have fatigue. I feel like I’ve always had an over active neurologic system. I’ve had panic attacks and anxiety my entire life and ive just learned to live if with it. The odd sensations and sore/tight muscles and twitching and tingling sensations and feelings of weakness and wobbliness just add to the anxiety. It’s real, I feel it! I’ve been extremely stressed for the last couple weeks and far from family during this covid situation and it’s brought on horrible physical symptoms. Also, the feeling of not having a doctor understand what I’m dealing with and having to start all over with new tests stresses me out more as it will become extremely expensive yet again. Anyway, your post helped me. Thank you

Hi

Have a look at https://fndhope.org/fnd-guide/ It is quite comprehensive in its detailing of symptoms. As you’ve seen several neurologists and had various tests in the past, it is likely that you don’t have MS. Yes, occasionally people do slip through the net and have negative tests but are later diagnosed with MS, it’s just not too likely.

There are other diagnoses too which may resemble MS, fibromyalgia is another one which many people presenting with possible MS are diagnosed with (as you’ve considered yourself).

It is worth seeing your GP and getting a further referral to a neurologist (or whichever other specialist the GP things might be more appropriate - a rheumatologist maybe?). Meanwhile (and it is likely to take a while for any hospital appointments to come about), try thinking back as far as you can, and try to reconstruct a diary of what has happened to you and when. This might help you to organise your thoughts on your symptoms and will be invaluable when you do see a specialist.

You might ask your GP in the meantime to arrange for blood tests for vitamin deficiencies as sometimes these can look like neurological problems. I’m thinking of vitamins D and B12 particularly.

Best of luck.

Sue

Dear Sue,

Thank you so much for your response. Your post and the previous has helped point me in the right direction. It will be necessary for me to find the right GP who can help. The stress of having to redo all the tests I’ve already done makes me more anxious and helps to make my symptoms worse as well. It’s a vicious cycle. Thanks for the info. I greatly appreciate it.

That is good to hear Michele and like I said in my prior post I did improve once the stress of all the uncertainty reduced so hopefully the same happens for you

I’ve had MS like symptoms and also have had several rule outs but continue to have episodes randomly of leg weakness and other neuro symptoms. I didn’t see any response mention possibility of autoimmune diseases. Many have symptoms that can resemble MS and why it’s such a process of elimination for diagnosis. Maybe a rheumatologist would be good idea to have an ANA Titre done to rule out certain ones