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Moonmark

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Hi- I just wanted to let you know that I decided to pick up the EMG/NCV report in advance of my appointment with the neuro, and both tests are normal, showing no evidence of ALS, neuropathy, or myopathy. The neuro's office called, too, to bump up my appointment to July 8, and the nurse said the dr. will go over all the other tests (primarily for MS) and may order additional testing.

As the parent of a two year old girl, I cannot tell you how relieved I am to hear this news. I still do not know what is causing my limb weakness, hand/forearm atrophy, twitching, muscle pain, fatigue, and exercise intolerance, but I am hoping it is something manageable and treatable.

Thank you for listening and offering support and advice. You folks demonstrate incredible courage, generosity, fortitude, and great humor (!) in the face of enormous challenge. You are inspiring.

I am not really sure where to go next or what I should be pursuing for further testing regarding this baffling condition, so any suggestions would be appreciated.

I hope that whatever Katie Couric reports on tonight or tomorrow (or whenever) proves to be a promising treatment for this horrible disease.

Wishing you all the best,

Sandra
 
Sandra,

That's great news a clean emg....I hope you can get answers also.
 
Sandra,

I am so happy to hear that! I personally am going to try and get a second opinion - I need answers for my own foot/ankle and hand/wrist atrophy too. I'm glad to hear you had a good report and I hope your doctor helps get to the bottom of it.

Missy
 
Sandra- That is great news, congrats! I am in a very similar situation as you so if you do get any clues as to what is what is causing your issues please come back and share them with all of us in undiagnosed land. My neuro's told me that I might have a mitochodria disorder and a muscle biopsy is the next course of action if I dont improve by Sept/Oct. You might want to mention a muscle biopsy to your Dr.s when you meet with them. Take Care!

CB in Ohio
 
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