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Old 03-29-2012, 07:22 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, Jeatak. Welcome.

Quote:
All of these symptoms are intermittent and have various intensity.
I had to laugh when I read that! That's what MG is all about! It gets worse the more you do and better (relatively) with rest. Fatigability of muscles is what makes MG unique.

Are you sure you didn't aspirate something into your lungs, thereby getting pneumonia? Those kind of infections are hard to get rid of. Did they do a chest x-ray? You might still have an infection. Infections can make MG worse. Vicious cycle! Please see your primary doctor to make sure you didn't do that. Aspirating is actually a common thing to do when you have MG. You can have "walking" pneumonia. Are you short of breath at all? Have you been assessed for sleep apnea?

I think you need to talk to your neurologist. Obviously, Mestinon is not enough for you. You might have to change the spacing between doses and possibly go down a bit on the dose amount. Sometimes it's more important to have a consistent supply of Mestinon and not necessarily a huge dose. I am on 90 mg. every 3 hours but that's what works for me. Everyone is different. Don't change things until you talk this over with your neuro.

We have 640 skeletal muscles that MG antibodies can attack. That includes the esophageal/swallowing muscles. It can affect peristalsis, how food moves through the GI tract, too.

You may want to make sure you sip on some cold water between bites of food. Not too cold! Also, what Brian suggested about seeing a specialist for a swallow test is a very good idea.

Talking a lot will stress out the eating/swallowing muscles too. Crying too. So think about what muscles you are using during the day and, by the end of the day, they will be more weak!

I hope you can find some relief or better/more treatments. Good luck!

Annie
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