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Old 01-28-2014, 05:54 PM
4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
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All of your symptoms are definitely not normal for the average person, but absolutely normal for a person who has MG. Sounds like your doctor is zeroing in on the problem.

I have MuSK MG, but please be aware that you can have negative antibodies on all tests and still have MG. There are some different antibody tests that have not yet been developed.

As for the DV specifically, all you write about happens with mild-moderate MG. Unfortunately, it can get much worse. That will be more likely if you test positive for MuSK. I have had truly horrible DV and ptosis at times.

The neck weakness is troubling, as it can precede swallowing issues, which can precede breathing issues. Again, it's so wonderful your doctor is being so attentive.

And then there's your family. Families often respond in less than a helpful manner. It is very frustrating, and is likely "denial" on their part. I'm sure early on in your journey you had days where you tried to talk yourself out of the symptoms (it might still be happening). However, with a little education and hopefully a firm diagnosis, they will adjust along with you.

Keep posting! There are a lot of caring people here.
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