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Old 03-29-2017, 12:44 PM #1
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
Posts: 791
10 yr Member
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
Posts: 791
10 yr Member
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Originally Posted by Summerfun View Post
You are an inspiration Healthgirl and you motivate me to keep pushing. It has been just about 3 years for me since the SFN started and I too am still idiopathic. I have seen the neuromuscular neurologist and the rheumatologist and just starting with the geneticist (only because I shared my father's history not because the question(s) were asked). I don't expect to find a cure but I would very much like to understand what the heck happened to set this horrible disease off. The list of meds you shared is dead on and how sad is that. It seems the doctors go to a "procedure manual" and follow instructions. We have to rely on the researchers who have a genuine interest in figuring out how things work. I applaud your persistence and your enthusiasm for life regardless of what it deals you. Your family is lucky to have you!
Thanks, and I am lucky to have access to medical literature and the ability to research to have been able to put some of the puzzle together. Before the internet it wouldn't have been possible. These groups are amazing. How frightening would this all be with out anyone anywhere to really understand?

Did your father have symptoms at the age you were when yours started?
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