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Mw40love

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Joined
May 28, 2016
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Reason
Learn about ALS
Country
US
State
Oregon
City
Portland, OR
I have had MG symptoms for a year, bulbar onset, with much relief from Mestinon. I do not have an MG diagnosis because all the tests, including tensilon, were inconclusive. Tensilon only improved my respiratory VC by 7%. My resp VC is now down to 60% but my MIP and MEP are holding steady, not good, but holding steady. Longstanding swallowing/speaking issues and severe weakness. Unfortunately, now I am having muscle wasting in right forearm, pain in Achilles' tendon, and fasciculations have moved to my tongue. I know these are very bad signs. I have my 4th emg tomorrow. I'll let you know how it goes. Been lurking on this site for a year and I know you will rally round if bad news.
 
Great news. No sign of ALS. Doc, and I trust him, says tongue fasciculations are from Mestinon. No recordable fasciculations happened during the test, which is good. Atrophy is probably from prednisone, which has helped MG symptoms. Bad news, no sign of MG either. I'm still listed as probable MG. This is the good kind of bad news. He scheduled another EMG in 3 months. (Has to be done. It takes three months to get an appointment with him. )
 
Great news! Thanks for checking in.

Best,
Laurie
 
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