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No answers - latest neuro appt.

hc1
After having a very strange couple weeks thinking I was for sure going to be told I have MS, I had my neuro appointment.

Well I love my neruo, he takes his time, shows me all my scans, examines me, etc.  But by the end of the appointment he looked at me and said "I really have no idea what is wrong with you".  At least he doens't think I'm crazy (yet).  He wants to do a couple more blood tests, random things like zinc and A1C, and do a lumbar MRI.  He is frustrated.  I am frustrated.  

I talked to him about an LP.  He said last time he was more leaning towards MS than this time after my latest episode of bilateral leg tingling/feet pain/muscle pain for 2 weeks.  So here I am with a tingly face, a funny feeling top lip, and a jello-feeling leg when I walk, just trying to take one day at a time.  

Thanks everyone for your thoughts the last few months.  I will continue to lurk the board and see what happens next. :)
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Avatar universal
hc1
Hi Kyle

My symptoms do wax and wane and sometimes I have no symptoms for weeks and feel great.  My last episode of bilateral leg problems has pretty much resolved and last week I had a numb face and tongue for 3 days.  That has evolved into just a weird feeling top lip and tingly tip of tongue.  

Thanks for your reply!
Helpful - 0
1831849 tn?1383228392
Hi HC -

While I'm living proof that MS symptoms can present bilaterally, this tends go be the exception rather than the rule. So I tend to agree with Sarah, it doesn't sound overly like MS.

Another thing that points away from MS is the time period you mentioned. You saud that you've had these symptoms for ten years. For most folks MS waxes and wanes, as in relapses and remits. Relapsing Remitting MS is the most common type. Symptoms will appear and last for days, or weeks or months, but then they go away fo a while.

There are people who don't go into remissin, and whose symptoms get steadily worse. This is known as Primary progressive MS and is the rarest variety. 10 years without signifcant remission or progression makes me think its other than MS.

Kyle
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667078 tn?1316000935
Sorry for your frustration. It takes awhile to get diagnoses. I had positive MS tests and it still took two years.I have seen people here a long time end up with MS diagnoses and other diagnoses all together.

Alex
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Avatar universal
hc1
Thanks for the reply Sarah.  I have a couple lesions that are unchanged over 8 years.  Nothing in my c-spine but some arthritis and slight stenosis.

I have had pretty much everything else ruled out at this point.  The bilateral leg tingling was a first for me, up until now the tingling has mostly been confined to my head and random weak left leg, slight tremor and buzzing feelings.  I have had these symptoms for over 10 years at this point.  I had some pretty bad dizziness and migraine like symptoms in the past but a lot of that has resolved since I stopped having anything with artificial sweetener.  My neuro said that makes sense to him as he has seen aspartame cause increase in migraine symptoms.

My co-worker, who is an M.D. in another specialty said it is good to not have found anything because all the bad stuff is ruled out.  Lol, I wish I could think like that! :)

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Avatar universal
the bilateral is pushing MS out of my think board for you.  It can but usually doesn't start that way.  I assume there were no lesions on the MRI?

AIC will just indicate diabetic possibility but there are so many diseases that mimic MS.  An LP can indicate MS but not always.  Mine was totally negative for bands.

Lurk all you want, we love company and I hope you get some answers soon!
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