Quote:
Originally Posted by hobiejuan1
Nick, sorry I forgot to write on the last post that this is your friend John D. from Atlanta. I don't post here much and I found this by accident. My wife has a disease called myasthenia gravis.
She had all kinds of crazy symptoms (all different from yours) and then one day she woke up and one of her eyes was noticeably pointed towards her nose. That's when we got serious about getting a diagnosis. Finally after at least 4 neurologists we found one that was familiar with the disease. She got on the right medication and ultimately had a surgery to help with the symptoms.
So my advice is to keep going to doctors and getting different opinions. Hope everything works out. Let me know if I can help with anything
John.
Oh hey John! I knew I knew the screename somehow but couldn't put my finger on it.
Wow man how long ago was the diagnosis? How long were the buildup of symptoms? Did she do an EMG test--what were the results of that? MG was actually one of the first things I thought about and my PCP agreed. PCP did the blood test for it (reportedly 90% accurate for general MG and 50-70% for occular MG).
Actually just looking through mychart notes, I found the first EMG (June) results, I'd not actually read his detailed report.
"This is a mildly abnormal study. Abnormalities on cardiovagal testing are consistent with a mild widespread small fiber polyneuropathy. This may be seen as an early manifestation of neuropathies owing to a wide variety of conditions including abnormal glycemic control, thyroid dysfunction, connective tissue disease, and toxic neuropathies. Clinical correlation is recommended.
There is no electrophysiologic evidence of a widespread large fiber polyneuropathy, motor axonopathy (e.g. motor neuron disease), or myopathy. The complete normality of single fiber electromyography of the left frontalis argues strongly against an underlying defect in neuromuscular transmission.
As the attending physician, my signature affirms that I personally participated in the clinical assessment of this patient, performed or reviewed all electrodiagnostic procedures, and prepared or reviewed the conclusions of this report. Pertinent nerve conduction study waveforms have been embedded within this report; all waveforms are available for review upon request."
This is fairly consistant with what I've been experiencing because thankfully I do not have any weakness or atrophy or anything.
I have my follow up EMG tomorrow actually. So we'll see.
Thanks for the posts man. We should catch up in person someday!
Quote:
Originally Posted by plaaynde
Have you tried not to do any exercise at all for say 2-3 weeks? You could watch which symptoms would get better. Then figure out if something could be done differently.
I've been considering doing this, but dreading the idea of it. I took 1 week off a couple months ago. Generally speaking I'm trying to go a lot easier.