Well the second test came back POSITIVE also...NO SURPRISE...with numbers as high as the first test, my doctor didn't think anything differently. I am now up to a total of 300mg Mestinon a day (180 mg time span + 60 mg in the morning and an additional 60 mg by 2-3 pm) I go to Nowthwestern University Hospital to meet with a doctor who has more experience than my current doctor...my current doctor wants to see him and thinks I might be on a fast track to Thymectomy....I don't care!!!! I just want to feel better!!!
They are afraid to try steroids because of the CRAZY HIGH number of the antibodies...not sure of the result....so we will see what happens in Chicago next week...until then, I will go sleep on couch as I am super weak right now!!!
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Originally Posted by suev
Hi Darci!
Glad you are responding to the Mestinon! And I think it's great that your doc has you slowly increasing your doses slowly. It will give you the best feedback on what is enough or too much (which, of course, changes with weather, activity, stress, etc.!!)
You may be lucky and have no side effects with Mestinon. I don't. Anyway, it won't change your antibody levels at all, but it can distort EMG's. Annie has the best description of how it works....but think of it as a drug that slows down the deactivation of our muscle 'go juice'. It takes about 20-30 minutes to kick in and lasts for about 4 hours. Think of its effective time on a bell shaped curve - takes a bit to kick in, great coverage for a bit, then the effectiveness begins to wane.
Will be curious to hear what the second blood test shows - never heard of antibody levels as high as yours!
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