unn o:I met with a new nuero at Northwestern University Hospitals in Chicago today and am meeting a Cardiothoracic surgeon on Wednesday. I am scared and hopeful. I am a mess of emotions. Right now, the neuro changed my Mestinon from 180 mg Time span + 60 mg regular in AM and 60 mg at 2 PM (that is what the first Neuro....to 90 mg regular 3 times a day morning, noon and evening....so I will be actually going DOWN in mg per day...but he does not believe in the time span....He has also added Cellcept....500mg once a day for 5 days and then up to 500 mg Twice a day.

I am scheduled to meet with a surgeon and get evaluated for Thymectomy...with plasmapherisis post-op.

I do not have a thymoma....my antibody number for the AChR test was 249 (which puts me at stage IV on the Osserman scale) This new doctor thinks I may have been misdiagnosed 10 years ago, when they told me I had Fibromyalgia....and over the time things have been getting worse and in the last 1 to 2 years, things are getting really bad FAST!!!!

What do I need to ask surgeon? What do I need to know? I feel so overwhelmed right now....I have read/heard that the best way to go (even without a thymoma) is to have the full sternum opened...to make sure everything is gotten (at least to the best of their ablility)....I will post again soon...I need to rest up some now.

Thanks

Darci......from Chicago