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Old 04-21-2014, 08:45 AM
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
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cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
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Welcome and sorry you have to be here! The worst thing for MG is physical or emotional stress. I know how going through the rounds and rounds of specialist with all the possible different diseases is frustrating and frightening. You need to find some way to de-stress so you don't make the situation, especially if it is MG, worse.

As Annie said, the hallmark of MG is fatigue. Are you better in the morning than at night? Are you better after you rest or sleep? Are you worse in the heat?

Due to your thymus results, I would ask for ACHR and Musk antibody test. You said your ANA is positive. Did they do a C reactive protein and sed rate?

I am double sero-negative MG diagnosed by single fiber EMG. I also have another autoimmune disease. I have a lot of pain, but I think that is due to the other autoimmune disease, probably Lupus. MGers do not usually have elevated crp or sed rate, but you may have more than 1 thing going on. MGers often have more than 1 autoimmume disease. Thyroid problems, Vit D and B12 defiencies are also common. Ask for thyroid test and test for Vit D and B12.

I would suggest going to a neuromuscular specialist at a large teaching hospital where they have more experience with rare diseases like MG. Many local neuro have never even had a patient with MG.

Good Luck and let us know how you make out,
kathie
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