Specialist says he's 80% confident I do have ALS. Any reason to doubt this?

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Of course, there are abnormalities seen in the atrophied muscles, but the overall picture, as others have noted, does not say ALS.

FYI, monomelic amyotrophy is in fact a neurologic, not myopathic process. It is a motor neuron disease as ALS is, but not nearly as widespread or progressive. But there are numerous relatively benign motor neuropathies (as compared with ALS).
 
Of course, there are abnormalities seen in the atrophied muscles, but the overall picture, as others have noted, does not say ALS.

FYI, monomelic amyotrophy is in fact a neurologic, not myopathic process. It is a motor neuron disease as ALS is, but not nearly as widespread or progressive. But there are numerous relatively benign motor neuropathies (as compared with ALS).
Okay, that makes sense. Thank you again.
 
Hello, everyone,

I just wanted to update the thread for anyone interested. I'm currently at Mayo Rochester. After the first consult, it seems they're leaning towards an atypical presentation of Spinal and Bulbar Muscular Atrophy. I thought this was already ruled out when I was tested for SMA, but apparently it's a separate test. I'm waiting for results now... So we're hopeful we can pinpoint a mimick.
 
I hope you get answers soon, Seth. Keep us updated.
 
Update: Mayo, Rochester has been amazing. After a number of curve balls and redirections in the plan, they now believe it is an odd presentation of Multifocal CIDP. They said they need a nerve biopsy to confirm because it's been an atypical form.

Thank you to everyone on this thread. You didn't have to, but you took your time to help... I hope the best for you all.
 
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