Mariewl28

Thank you all for your advice! I have been researching (an obsessive tendency of mine) for a syncope/autonomic dysfunction center. I think my problem at this point is that I have co-morbidities and diagnoses that I can't find one doctor that specializes in everything. Cardiology, Neuro, Rheumatology (I have hyper-mobility), and Opthalmology. I regards to Cleveland Clinic, I'm not sure how to approach changing doctors after establishing a relationship with my current Neuro there. I'm somewhat reluctant to stay there while he is part of that group- I'm not very good with conflict- even a mild one. I have also been looking at Vanderbilt. However, due to my long list of medications and reactions to new ones, I don't think I'll be eligible for any clinical trials. Since I already have a diagnosis, I'm not sure I'll fit the clinic either. I'm going to call them on Tues. to see what they think. KatyBug-thanks for the info on steroids. I'll let my Ophthalmologist know, and see what she says. In my research, I came across Beth Israel Deaconess at Harvard, and I have already been rejected at Mayo twice. I'm not attempting that again unless I have a good reason. Brigham and Women's maybe? Stanford (I know I said east coast, but I'm just wondering). Any thoughts?

Hi all! I'm new to the forums, though I was diagnosed with POTS in Oct. 2014. After years of unexplained syncope and other neurological symptoms, I went to Cleveland Clinic where I have been seen by a General Neurologist. He has been very compassionate and helpful with diagnosis, but I have been on Midodrine since Dec. and Florinef for years, with no improvement. I like my Neurologist there, but he is somewhat unresponsive, and seems to have no thoughts going forward on treatment. I just had a sleep study done, and found I have central sleep apnea, and was throwing PVCs in my sleep. I also have urinary problems, and my symptoms appear to be progressing more rapidly. I am concerned because I also have glaucomatous changes in both eyes, apparently from my low blood pressure while sleeping. I have mentioned all of this to my current neurologist, who acknowledges the problems but does not inform me as to what they could mean. I'm thinking about finding a specialist in Autonomic Dysfunction, but I am having trouble finding a center that treats POTS that is already diagnosed. The places I have found do clinical trials, but I do not react well to new medications and treatments, and am already on a lot of medications. I am looking for a treatment center toward the East Coast, but any suggestions would be welcome.