Posted by janet on 1/19/2004, 10:18 pm, in reply to "Re: Does this sound like eds" Who did your diagnosis I mean I went to some of the best specialist in the world (Hawkins and miniachi) and neither mentioned anything and they knew my brothers had problems Hawkins did both of their shoulders. I would think that this would be one of those things they would look into. Or is it because they are money hungry and knew that they would not get to operate as often. I go back to my current surgeon in april and i am going to ask him if it is possible and see if he can get me into a doctor who has a clue. Thanks again --Previous Message--
Thanks for the info
: : Hi Janet. I am also 30. Was diagnosed
: with EDS when I was 15. I don't know
: if you have EDS or not but it sure
: sounds like it. And if it is, surgery
: isn't going to help (as you've
: already experienced.) I recently saw
: another orthopedic surgeon to see if
: I could get my ankle fixed. My foot
: is pretty much totally detached from
: my leg. I haven't seen a specialist
: for many years so I was hoping that
: by now there would be some miracle
: cure. He said (and I've heard it many
: times) that if I didn't have the
: connective tissue disorder, it would
: be a routine proceedure to fix it...
: A few weeks in a cast then I'd be
: good to go. But since I have EDS,
: chances are that it would take 3
: months recovery from the surgery and
: then there would be a very slim
: chance that it would work. Chances
: are, within in weeks or however long,
: it would just stretch right back out
: to where it is now. Sorry, I'm kinda
: rambling.
: I also have children. 4 and 1. The
: one year old is snapping and cracking
: but the doctor says that so far,his
: joints are stable, and he walked and
: crawled at an average age.
: Feel free to e-mail me. If I can help
: you figure this out... or if you have
: any questions. Every joint in my body
: is now affected so I know a bit about
: it!
: Take care.
: Onale
: --Previous Message--
: I am 30 yrs old. since about the age
: of 5 I have had alot of knee and hip
: problems nothing ever showed on x
: rays and my gp at the time said it
: was growing pains. Then my shoulders
: were dislocating constantly I have
: had 7 shoulder surgeries to tighten
: up the joint to no avail and i
: finally had my arm fused. I get
: wickid bad scars even from bug bites
: etc. My teeth are rotting out of my
: head no enamel left on half of them.
: My brothers and mother a few great
: aunts etc all have simular issues.
: When my brothers and I were babies
: none of us crawled and when we fell
: forward we all threw our arms behind
: us and fell on our faces instead of
: catching our selves. Both brothers
: have had shoulder surgeries as well.
: When i asked my previous surgeon if
: this was heritary he said it was just
: a coinensidance. My problem is that
: In london On there is a major
: shortage of GP's and I can't find one
: that will take me on as a patient
: because of my many problems. anyone
: know if a walk in clinic could help
: with test or diagnosis? I must say i
: would be relieved if it is EDS at
: least i can stop thinking i am
: insane. Any help would be
: appreciated ALOT. My 3 yr old son
: pops and cracks and did not crawl
: either and i am scared to death for
: him
: :
:
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