Hi everyone, I just wanted to share some things I have learned after searching the planet Earth for doctors with INTEREST and KNOWLEDGE in dysautonomia. I try to read up on pubmed for abstracts about it, then I try to find those authors. I also have used the** for doctors who at least have enough interest to register themselves there, and from seeing a doctor on that list, I was referred to another one who actually is excellent.

Sylvia, I saw that the doctors at Columbia's Peripheral Neuropathy Center write a lot of articles on autonomic neuropathy, and there is even a paper on better diagnosing patients who were referred there for idiopathic autonomic neuropathy. I don't see any doctors on the list from NYU, but Dr. Kaufmann at NYU looks like the only neurologist on staff in the autonomic clinic, and his papers are mostly on non-autoimmune types of dysautonomia. So, I don't know if you have been to or considered Columbia yet.

Mat, I know a little bit about the eye. It sounds like you might want to ask your next ophthalmologist which part of the eye he sees nerve damage in. Ophtho's will usually photograph abnormal appearing optic nerves, and do visual field tests for patients with visual symptoms like you describe. Low blood pressure problems could cause low tension glaucoma (which can be harder to diagnose), and that would be something that the doctor would definitely want to treat...but I don't think it is even talked about much in the ophthalmology community because it may be very uncommon. Other signs of nerve damage in the eye are pupil disorders...pupils are usually smaller and are slower to dilate and constrict in response to light. Dry eyes go along with the autonomic neuropathy because the signal to the tear glands isn't normal. Also, oligoclonal bands usually implies an autoimmune process in the central nervous system, did you have a spinal tap? If you are positive for that, they should be treating you, not ignoring it because they don't know what it means. Even if you see an MS specialist, they would know about oligoclonal bands.

One thing I personally found helpful for my bp problems was to raise the head of my bed up by 7 inches, on risers, which are inexpensive and easy to find on internet shopping sites. By sleeping at a tilt, with the head up, the veins in your legs don't relax as much, so you have better tone in the morning when you start your day...anyway, it is recommended on a lot of sites for autonomic neuropathy. For me, it greatly reduced the severe headaches I was always getting from low blood pressure. Compression stockings on the legs are also recommended. I take florinef and midodrine for low bp, mestinon (helps bowels contract), bethanechol (helps reduce urinary hesitancy and retention), propranolol (lowers rapid heart rate), as well as immunosuppressants.

Most people on this forum sound young and like these symptoms are acquired, so I recommend the full panel of dysautononic testing for all the antibodies. If I was only tested for the AchR antibody, my diagnosis would have been missed again, bc I have the GAD65 antibodies. I also read that it usually takes patients like us several years to get a proper diagnosis...that means we spend several years going from doctor to doctor until we find one who knows what to do. Don't take no for an answer, and just because they tell you all your tests are normal, it only means they haven't done the right test yet. Believe me, I was told there was nothing wrong with me but anxiety for years, while I lied on their exam table with my heart going at 130. Even Mayo Clinic diagnosed me with POTS, and followed that up by telling me it was due to anxiety...and offered no treatment, so my trek continued. I wish I had gone to the Cleveland Clinic or Johns Hopkins early on, I have read excellent things about their neuro and rheumatology departments.