EDS Clinic in Baltimore

I filled out my 31 page packet & mailed it in!  I will hopefully be put on the waiting list to go see the doctors there that actually know how to help with EDS!

I tried seeing a cardiologist here, they made the appt & called to confirm, when I got there they refused to see me! I have never had that happen to me before!

I am now seeing a:

rheumatologist: Gives me most of my medications, helps with referrals, responds to e-mails, diagnosed my Secondary Raynaud's (he's a keeper)

physiatrist: Ordered my bone scan, said she will be my rehab coordinator, asked me if I had EDS without me even telling her, sent me for PT, diagnosed mt shoulder subluxation & possible labrum tear in my hip, explains everything to me! (definitely a keeper)

neurologist PA: Gave me muscle relaxers after agreeing to do a cervical MRI, that's about all he did, other than that I really, really do not like him & I am not going back (looking for a new one)

Physical therapist: LOVE HER! She takes it slow, knows about EDS & chiari, does mostly ice, massage & isometrics (which has been the best type of exercise for me & I am amazed nobody showed me them before) (another keeper)

Psychiatrist: Gave me meds & listens to me, not much else, except helped with my anxiety (not sure if I will stick with him)

Neuropsychologist: Did testing & diagnosed "mood disorder due to a chronic illness" which Neuro PA interpreted as "anxiety is your entire problem, seek therapy, take magnesium & exercise" because he is an idiot! (only saw her once)

Cardiologist: Did nothing! (looking for yet another one, 2 down so far)

PCP: Says she will help with whatever I need, then sides with cardiologist, claims vertigo is my underlying problem, tells me buy my braces OTC and they will make me worse. (looking for a new pcp with no luck)

Chiropractor: Very helpful, gentle, listens, I just can't afford to see her often :( because insurance doesn't cover it.  Helped SO much with my TMJ disorder!

Oral surgeon: May have to go back, I know I have a perforation from a past arthrogram

Orthopedic surgeon: Knowledgeable, but says it's too risky to do knee surgery because of EDS & my allergies.  but my MPF is torn & my patella dislocates... this is still my worst joint!

Allergist:  I am now on 2 allergy meds, he is not familiar enough with Mast Cell Activation Disorder, did a PF test which was fine, like always!  He is very nice, but needs to do some CEs on MCAD since he is also an immunologist as well!

I think that's most of them!