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Originally Posted by Healthgirl
Hello,
So EDS is a collagen disorder. The connective tissue is missing a link somewhere so its kind of incomplete. The joints are unstable which causes terrible strain and over work of the muscles and weak ligaments and those are both compromised as well. The joints can be hyper flexible, skin is soft. Dysautonomia is common with it (temp regulation, digestion, absorption, respiration, heart, basically everything your body is supposed to do automatically is haywire and random when it should work in sync with out a thought). I knew we had some sort of a genetic connective tissue disorder for a while, but I was still in denial until all of the evidence put together from this journey doesn't lie. I wish it could turn out to be a lie. Things could always be worse though and I'm thankful for each day. My children do well in school and have nice lives. We are everything we need and will stay positive for improvement from the neuropathy for me and for it not to progress in the kids.
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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!