Re: I'm Official! --

[Guest guest]

Thanks for the advice, . I will see if my insurance will

authorize a second opinion, but I'm not sure if they will since I

already had to go out of network for the first one. Plus, the

geneticist I saw is at Harbor-UCLA hospital, so I thought he'd be up

to date. If I could get them to approve an appointment at Ceders-

Sinai, that would be awesome... they have an entire Marfan's clinic,

so they should know about EDS, at least somewhat, I think! But, that

is who the rheumatologist originally tried to refer me to and the

insurance denied the referral, sending me instead to Harbor-UCLA.

I'll let you know if I have any luck...

> Dear ,

>

> If I were in your position I would go to a second Geneticist,

if just for another opinion. This is a confusing condition and each

Geneticist seems to have their own ideas on what symptoms, and

severity or lack thereof of each, makes up each type.

>

> With you personally questioning the vascular aspect, and with

others advising that the skin biopsy test is normal procedure, it may

be a good idea to seek out another Genticists opinion.

>

> If possible try and go to a major hospital as they are usually

more up to date - though they can have morons posing as docs as

well :-)

>

> Hugs,

> B.

> HEDS, New Jersey, USA