Posted by Sheryl You better call me instead of an email and I will call you back. I have 1000 minutes for US and Canada (24/7) and I usually only have around 300 - 400 used per month.(604-854-2344) I don't usually go to this site, but I'm looking for a friend's #. It gets depressing just hearing negative and you completely understand because you have the same symptoms, but you can't do a thing to help. My family has all you list plus more. Hope you call. Sheryl --Previous Message--
on 3/28/2005, 2:51 pm, in reply to "do I belong here?"
Ehlers-Danlos Syndrome is aconnective tissue diorder. Marfans is another one like it. Our family was thought to have Marfans, so we were sent to a rhemtoid arthritis specialist to tell the difference. I don't know where you live, but there is a geneticist in Calgary, AB that diagnoised us. Since moving to BC two years ago, I have found no one who knows or will treat myself and 3 kids. My brother is in Calgary, turned 30 this month and is in a wheel chair most of the time to help the joints from falling out. Putting wrists, neck, elbows, shoulders, ankles, fingers, etc. are a daily routine for us as they fall our in our sleep. I can't type much due to chronic pain and chronic migraines (daily headaches). Not all EDS patients have the migraine symptom, but if they do it's horrible. Please email me if you want the geneisists name/ phone number. There are few geneticits that can diagnois this disorder, but it sure sounds like you have it. My phone # is 604-854-2344. If I don't answer, just leave me a message and I WILL call you back. Not being diagnoised is one of the worst things possible. This alone can make your symptoms worse. My hips go out all the time, but I don't have a doctor that believes this to be possible. We seem to still be able to move with dislocations due to the flexibility; however, the pain is unbelievable. I have 3 kids (10, 12, 14)and the oldest now couldn't go to a public school if I didn't home school him. He has an appointment in Vancouver to go to a pain clinic for pain management. Hopefully he can get something that will work.
: my p.t says I have hypermobile joints.
: several times weekly i have to get
: my Si joint(s) pulled back into
: position. I have arthritic neck with
: muscle spasm,DDD,spinal stenosis,
: chronic sciatica(28 years no
: relief), Hip joints i can snap in
: and out and maybe arthritis in my
: fingers. The first finger joint
: keeps slipping out--and every
: morning i have to snap my wrists
: into place. I was diagnosed with
: celiac disease 4 years ago. i went
: to the FM site and they suggested i
: check in here and see if You all can
: help.
: Thanks.
:
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