Advice on a rheumatologist/neurologist who will handle autonomic dysfunction?
 

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!

There are not many autonomic specialists out there. The Mayo Clinic has the most extensive autonomic testing, but it sounds like you have already had everything diagnosed.

Treatment is limited and symptomatic. You are already addressing your primary areas of concern...except maybe a urologist.

Hopkins have great neurologists and rheumys, but they do not have a good autonomic specialist. My neuro there sent me outside the Hopkins system to another autonomic specialist in Columbia MD. I'm only semi-impressed.

It doesn't sound like they have identified the autoimmune component. Have you had any testing for this? What are your most pronounced autoimmune symptoms? Once you identify this, you may find the best care at that type of "center"...like the Sjogren's center at Hopkins, or Lupus center, etc.

Hello Carrie :)

I do not have any valuable information on any specific specialist in your area. I do hope other members are able to chime in.

I did however want to take a moment to reply and say I understand your struggle. I am also 25 year old female with autonomic dysfunction (Neurocardiogenic Syncope, POTS, Orthostatic Hypotension) and a autoimmune component with similar symptoms.

In my own experience I have always had separate specialists because they are (seemingly) desperate entities. As for your tentative diagnosis, I wish you there best in finding a more concrete answer and treatment :)

If you are already part--
 

--of the Cornell medical system, it makes sense to be evaluated by the Cornell-Weiil Center for Peripheral Neuropathy.

Dr. Latov and company run one of the world's leading centers for clinical practice and research in peirpheral neuropathy, especially those of autoimmune origin; the ganglioside agglutinin test was developed there, and they do extensive autonomic testing.

I have autoimmune autonomic ganglionopathy, and I have been diagnosed for 1.5 years. A rheumatologist is not going to be of much help for you unless you have other autoimmune diseases. You must get a neurologist on board, particularly a diplomate in autonomic disorders.

Horacio Kaufmann MD and Lindsey Lair MD are both diplomates in autonomic disorders in NYC.

Good luck!

Going to see Dr. Nicholas Tullo in West Orange. Also NYU langone center can help you out.

Dr. Weimer at Columbia Neurology! I had an AAG test done in-house there. The wait might be about two months, though. There is an excellent barbecue place across from the Children's HOspitalm if you're into juxtaposition.