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Old 10-12-2012, 01:07 PM #5
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
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AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Tricia, Why not go to Mayo? Does your insurance cover it?

What part of the body was the SFEMG done on?

If the EMG was abnormal, why aren't they considering MG?

It would seem to me, since you had such a strong response to Mestinon, that a Tensilon test would be a good idea. They could do breathing tests before and after Mestinon too.

Do you have ptosis, so that they could do a before, during and after photo of it during a Tensilon test?

Have you seen a neuro-ophthalmologist? Dr. Alan Weingarden of The St. Paul Eye Clinic is very good. I'm not sure if they still do Tensilon Tests but you could call and ask.

http://www.stpauleye.com/MeetOurStaf..._S._Weingarden

I think a thorough evaluation with a pulmonologist before seeing another neurologist would also be a good idea. Then you will have compiled the opinions and facts from two other specialties before you again see one.

Sometimes, the MG antibodies don't show up right away. And they can come and go! That's why MG is a clinical diagnosis backed up with tests. It doesn't act like other diseases (usually).

Well, those are my thoughts. I hope you can get some more evidence that will pry open the mind of a neurologist.

Annie
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