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140221A Offline
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Name: Ryan
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rare muscle disease - May 31st 2013, 03:19 AM

this may sound like a made up word but i have polymyositis that i am currently battling... does anyone else have this? or have family/friends that do?

what this is, is basically a rare auto immune disease that makes my muscles very weak. for example, i cant lift my right arm, so putting on shirt or washing my hair have become difficult tasks!!!.even drinking a simple cup of water if a hassle.

my throat muscles are also affected (i am on a liquid diet cause i cant eat regular foods, it really stinks and makes me eager to eat a sandwhich or fries... anything else but soup lol) so im losing more weight than i should

if you have any tips or suggestions im willing to listen
   
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Re: rare muscle disease - June 2nd 2013, 08:52 PM

Hi Ryan,
I have never heard of this and the name does not surprise me or sound weird, there are many strange, complicated to pronounce and long names for many autoimmune diseases and other conditions.
I do not know anyone with this but I can tell you that if you are wanting to get to know other people with this you can look online and see if your area has support groups for people with this autoimmune disease or autoimmune diseases in general. Hospitals usually run these groups or people in the community that have the disease that is the focus of the group. If you are having any complications or need help with completing tasks, you could talk to your doctor about any suggestions they may have that would make doing things a bit easier and less complicated.
Hope this helps and you can PM me if you ever need anything.
Take care and stay strong.


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