Hi Sandi, do you get things like head ache's constant body pain or neck
problems??? I do a ton of searching constantly and I have a few ideas but I
need more details on what yoour symptoms are. Have you looked into
Fibromyalagia? Or P.O.T.S. ? Both of these can cause all sorts of problems
like EDS but like with Fibromyalgia your not flexible. But it still is a
connective tissue disorder (My mom has it). Can you explain to me a little
more of what is going on? I do a lot of seaching due to my kids being
diagnoised with EDS 3 yeas ago and only one of them really has it. My kids are
flexible, but only one of them can dislocate. But we know know that the real
issue with them is not EDS. The have a brain disorder that is undiagnoised and
it is getting worse so I am searching continuosly cause we need to know what is
going on. But has made me quite knowledgable. :-) So If I can help you, I
would like to. Sorry I live in Michigan, but I have family that lives in
that area. I will help you with what I can. :-)
and with EDS not many people have "the look". Only one type has a facial
characterisitcs. What type were you told to have? Well I need to get my son
off to school! I hope I can help you out.

Angie

Sandi <MLSLNG99@...> wrote:
Hi I originally posted last July after being diagnosed by a
Rheumatologist. I have seen an expert on EDS from Philadelphia who
says I don't have EDS because I do not have the flexibility or the look
and have never had a dislocation. According to him my uterine rupture
was a coincidence and my lung blebs too. I just need to lose weight
and all my pains will go away. Sensitive huh and he is considered to
be one of the leading experts in this.

So I was wondering if anyone could possibly recommend a doctor in the
central NJ area. My pain is getting worse and I have so many seemingly
unrelated symptoms. I am of course still worried about my son and his
issues. He can now pop his shoulders out at will. Even though I tell
him not to.

As always I sincerely appreciate any info anyone can give me. Thanks
so much






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