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Tony292

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So I've been at this process trying to get a diagnosis for three years now. It's been a hard road. I am still in the Army and have been for 17 years. My disease process and diagnosis has literally been all over the place! I'm no faker or malingerer, quite the opposite. I was used to running five miles a day five days a week for years.... And then at 14 years of service and less than ten pages of medical records, and. At 39 years old, everything went to crap. I had widespread fasiculations, brisk reflexes from the waist down, positive babinksi reflxes, leg weakness, stumbling gait, and lots of pins and needles and numbness. After brain and spinal MRI, spinal tap, and five EMGs and NCS in the last three years, I've been diagnosed with seronegative MG. I had one neurologist (of nine) tell me I had ALS, that was a year ago... But in the last year I developed ptosis, double vision, and breathing difficulties. My diagnosis is clinical, and came through two different Neuro opthalmologists, I tested negative for all five of the MG antibodies and four of my five emg were negative, the one that was positive showed "mild axonopathy" and several other abnormalities, a muscle biopsy showed mild denervation atrophy, but neuros say that is normal for a 40 year old. I am prescribed mestinon and am responding well to it. My last two emg were normal. Mayo clinic did not do jack shit for me, they are worthless from my experience. They would not diagnose me with anything.

Just wanted to acknowledge that it isn't always ALS! If I had ALS, I'd at least be in a wheelchair by now.... Or have had more than just one abnormal EMG. If you are undiagnosed, hang in there, it isn't always ALS, it could still be something else. I have bad days, but they are nothing compared to an ALS day... I can get rest or take a pill (mestinon) and be better for a short time. An ALS victim cannot... My worst day is better than thier best. And I am thankful for what I have, because it could be much worse.
 

Nikki J

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Thank you for the update. I am glad you have an answer finally. Even gladder it is not ALS. Good luck
 

LifeEnthusiast

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As odd as this sounds, congratulations on the seronegative MG diagnosis. No doubt you still have and do face challenges and frustrations, but your attitude is wonderful and refreshing, and you are genuinely compassionate. I wish you nothing but happiness.
 

chris15k

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Do you have anti-musk antibodies or other lab abnormalities?
 

Nikki J

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he says all MG antibody tests were negative And he just stopped by as a courtesy and has not returned since his post
 
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