Originally Posted by carrie2232

I am a 25-yo female with autonomic dysfunction causing POTS/NMH, gastroparesis, peripheral neuropathy...the list goes on. It appears my disease is autoimmune in nature and I was tentatively diagnosed with Autoimmune Autonomic Ganglionopathy (AAG), although I cannot find a lab that will run the antibody test to confirm.

I have a great gastroenterologist at Cornell who is really helping my GI issues and my blood pressure is reasonably well managed by Florinef and Adderall. I have been having numerous inflammation-related problems such as a worsening chronic neck injury and kidney infections (I have had 7!) due to urine retention caused by an inflamed urethra. I have achy joints/bones/muscles and have been getting terrible edema in my legs.

I am looking for a rheumatologist and/or neurologist in the New Jersey/NYC area that can manage the hybrid symptoms of autoimmune problems and autonomic dysfunction. I have yet to find one that can really deal with it or offer good treatment. Thanks for any advice you are able to give!