HI, Im Tracey, a new member to your forum. Im glad to find a place where I can share and learn from others. Im a 42 yr old white female - 5'10 - 140lbs , I live in Lexington, KY.
What I know:
I have Dysautonomia/POTS/ EDS-JH (I think type 3 as of right now).
I have an appt with Dr Brad Tinkle (in Nov) in Cincinnati where I will hope to learn more about my type if its more than type 3.
Do you have any other suggestions for Dr's with EDS as a speciality? Just trying to learn the best way to figure everything out the best I can- especially if I could have type 4 (I dont have many of the signs of type 4 but I know that doesnt always mean anything).
Im a lean manufacturing consultant, I have my own business and travel almost weekly to different clients. Im finding this is getting more and more difficult to do with my symptoms. Sometimes its depressing to be stuck in a body that hinders you from doing the simple things. Frustrating as Im sure most of you experience.
My worst symptoms:
Brain-ears-eyes connection - visual sensory perception overload - dizziness - disequalibrium. (Do any of you have this?) I figure its a connective tissue thing somehow.
POTS symptoms - Digestion, BP flucuations
Anxiety - due to all of this stuff
Actually Joint Pain I can tolerate and live with - Im flexible like Gumby on outside (less the older Ive gotten) - just wonder how bad the inside is.
I had a spont. pnemothorax in 1997 (I did have an allergetic cough for 4 mos prior to the collaspe). They did a pleuradesis (sp). No issues since. I was 28 at the time.
I hope to network and learn what I can here. Thanks for listening. I wish I could have made it to the conference this week.!! Thanks Tracey