Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 07-13-2010, 02:57 PM #3
Maxwell'sMom's Avatar
Maxwell'sMom Maxwell'sMom is offline
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Maxwell'sMom Maxwell'sMom is offline
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Join Date: Oct 2006
Posts: 371
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Hi Christopher, Make sure to do a google search for different forums to get information from many different MG'ers.
Also, make sure to check out the national Myasthenia Gravis organization at
http://www.myasthenia.org/

I know many have or had problems getting a diagnosis. I once heard an MG expert explain, that doctors want to see a Black and White result, mostly because the meds they give us are very serious, and they don't want to give someone these meds who may not have MG, and of course there is always the law suit issues.

Have you've seen an Myasthenia Gravis specialist, or a Neuro Muscular Specialist. If you haven't, you can find that info either at the web site above, or throus your local MDA. Either are usually more than willing to help.

One of the very things that sent me to the doctors was swallowing issues. Choking became my life, I don't miss those days at all!

Way before the Swallowing issues started, my legs would give out, I'd drop things, fall easily, so tired all the time.

Please feel free to pm me anytime you want. I'd be more than willing to help in any way I can.
Also I have many friends on facebook with MG. People who've had MG for many many years. Let me know If you'd like an introduction.

Best of wishes.
Remember "GOOGLE" and gather as much info from as many MG'ers as you can, from different place. Also, your MDA may know of a support group close to you!.
Love Lizzie
P.S. have you been tested for Narcolepsey? Many symp. are the same as MG. Or like me you could have both.

Last edited by Maxwell'sMom; 07-13-2010 at 03:00 PM. Reason: forgot something.
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