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I have a neurological muscle disorder and no doctor knows what I have now

Posted , 3 users are following.

sk8brdkd
sk8brdkd

Before I go into what's been going on and plaguing me, I just want to mainly know if anyone has had any symptoms similar to what I will be explaining and if anything has worked for you to take the pain away? or mostly away?

Growing up, I had gone through many Many different tests. I was tested for MS, Cerebral Palsy and Charque Marie Tooth (sp?) -- My neurologist finally came up w/ a term bc it "sounded" like it --- He said i had childhood spasticity. And he gave me all the long term effects and what not. The only thing he has been correct with so far, is that it has spread.

I used to only have the pain in both my calf muscles (starting in 6th grade), but, beginning in 2008, the pain moved into my thighs and in 2012, it moved into my feet and hands and in 2013, it went into my chest, 2014 it went into my arms and shoulders. That was the last "change" so far other then the pain has been slowly getting worse.

I had stopped seeing my previous neurologist back in 2008 bc he no longer could do anything for me and each of the medicines he gave me, wasn't helping and the only thing he could suggest was an iffy surgery where they'd cut my achilles tendons to loosen them. He told me the pain would either get better, worse or stay the same and depending on my muscles, I would most likely need to get the surgery done every 1-5 years. Sorry, not worth it.

I recently started seeing a new neurologist, and when after telling her all my symptoms and the pain I'm in, she looked at me and was like, you do not have spasticity. I don't know what you have, but you don't have that. And she went on to say how all of my symptoms are nothing she's ever heard of before and don't ring a bell.

She sent me to this other doctor who was a physical rehabiliation doctory (or something like that), i again went over everything w/ her and she said the same thing as my neurologist that my symptoms are very unusual and something she's never heard of or dealt w/ before and she has no idea what i have.

Dead end after dead end

The neurologist put me on baclofen again -- 90 mg --- it's Kinda helping but.... The other doctor put me on Amytripaline (spelling?) and she told me it would take 6 weeks to work. I took it for 10 weeks and it did absolutely nothing so, I got off it.

Both doctors say they want to help me out and figure out what i have but, they aren't ordering any tests or anything and just want to "talk" to see if my symptoms are changing at all.

I am typically a very active person but struggle with this pain holding me back. The only thing that I've found that helps somewhat is wearing compression calf braces and that's it. I wear them 24/7 often times.

But, if anyone has any suggestions or.... anything, I'd be very happy.

0 likes, 2 replies

2 Replies

  • andrewwakelin
    andrewwakelin sk8brdkd

    Posted

    Is the pain continuous, or is it related to activity? If so, is it at the time of the activity or does it come on afterwards? Does it affect all the muscles togeher or is the pain just in the muscles you used at the time? 
  • will24
    will24 sk8brdkd

    Posted

    You need to ask to see a neuromuscular specialist not a neurologist. Then have an emg done, depepnding on what it shows a muscle biopsy, and then genetic testing to try and confirm.

    they will also want to know if  anyone else in your family has muscle problems aswell as what your ancestory line is.

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