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Old 01-27-2009, 03:29 AM #10 (permalink)
bluesky
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bluesky
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Default Look Into Myasthenia Gravis

Hi Blizna,
I just came across your post while I was doing some google researching of my own. I have the exactly the same muscle symptoms as you do. Also, fatigue and general weakness to the point of disability and a slew of other problems. Afte 7 years of desperate searching I finally tested postive for the Achr antibody blood test, which apparently is a guaranteed diagnosis of myasthenia gravis. Be careful because the clinical description doesn't really match the subjective feeling of having this disease. A good site to look into is an mg forum in England:

www.mga.superbuilder.net

You might want to read a little through the forum and see if any of the stories ring a bell. If they do than INSIST on the two antibody tests (achr and MuSK) and a single fiber EMG. Even if the neurologists tell you you don't have it. It's called a "snowflake disease" because everyone who has it can appear so different.

Also, neuromyotonia can also appear in patients with myasthenia gravis. Search that site, there's a very good article and a very good description there.

Good luck! And don't panic please - this is the most well understood autoimmune disease in existence and is treatable. Whatever it turns out to be, I wish you the best of luck. Keep looking and don't let anyone discourage you.

- Bluesky