Thread: Dealing with MG
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Old 05-11-2009, 11:27 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Hi, Connie. Sorry I haven't chimed in yet - I've in the middle of an MG flare. That's when your symptoms get worse.

Yes, your symptoms all sound like MG. MG is basically skeletal muscle weakness that is worse upon exertion or repetitive activity. Eating is definitely repetitive! Just take smaller bites of food. I have found that during a family get together, I am always the last one at the table because I need to eat so much more slowly.

TEN WEEKS to get an antibody test back? Where'd he send it - to the Space Shuttle? It should only take a week to ten days. And I hope he did the Acetylcholine Receptor panel AND the MuSk antibody test.

You may not even realize that your eyelids are drooping. You could go see a neuro-ophthalmologist for an evaluation. They have these tools they can use to see if you have fatigable eyelid muscles. What they do is have you look at objects and see if they are "aligned" vertically or horizontally, etc. If your eyes are both aligned the same, they should see (for example) two horizontal lines on the same plane. I saw them as one up and one down!

There's the Tensilon test too, which not a lot of people do anymore. It's where they inject a fast-acting version of Mestinon and see if ptosis gets better.

Does the blurry vision get better when you close one eye? That's "technically" double vision if it does. If it's due to MG or a similar problem, it will get better when you close one eye.

Until you see this guy again or get another neuro, stay out of the heat. It makes MG worse. Go to www.myasthenia.org and read more. Ditto on what these guys have said about neuros and tests, etc. You need someone you can talk "with" and not one who talks "at" you.

I hope you get some answers soon.

Annie
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