I’ve reached the point where my doctors are recommending that I go somewhere for autonomic nervous system testing (QSART, tilt table, thermoregulatory sweat testing, etc.). My neuro recommended Mayo in Rochester MN, but I’ve read some pretty negative things about people’s experiences there. I am mostly interested in a diagnosis (of EM or something else if there’s a larger neurological or other issue), and understand that Mayo is not necessarily going to do much to treat. That said, Stanford has an autonomic testing lab, as does the Cleveland Clinic and a few other places. Has anyone had this type of testing done, and if so where? Would you go back? If I’m willing to travel to get answers, where should I try to go?
I was just at Mayo Clinic about a month ago and if you are going there for a diagnosis, they are the best at it and the quickest. Once you are there, they get all your testing done in a few days which would usually take months at other places. In terms of treatment, they seemed rather competent but they are a consultation center for the most part so whatever treatment they do, they send you back to your local doctor to undergo that treatment. Mayo Clinic has a great reputation and there is a reason for that but so does Cleveland Clinic and Stanford, however, Mayo Clinic, has physicians who know how to properly diagnose EM and also have the #1 ranked neurology department in the world so it seems like the best bet in my opinion.
I had a tilt table test done at Stanford, since I get lightheaded when I’m standing. It wasnt a bad experience, but the results stated I didn’t have POTS. I would love to go to a location where I could just get all the testing done and the doctors knew how to process the results.
I’ve been to Stanford autonomic neurology. Had tilt table, QSWEAT, valsalva maneuver and I think deep breathing. The neurologist then met with me in a second appt to explain my results and do an exam (reflexes, pupil contraction, things like that). Since my results suggested small fiber neuropathy, he took punch biopsy at a third appt and sent to Therapath Neuropathology. I liked the doc I had - explained things clearly + made sure I knew what was going on + answered my q’s. He was familiar with EM and ordered IVIG for me in case my SFN was apparently autoimmune.
I am not sure if they have the thermoregulatory sweat testing using the yellow-orange powder to evaluate sweat on the whole body. I know people have had that done in Mayo MN.
I was referred in by an MD and wait wasn’t too bad (I think a month?) if I took the soonest available
ps - I had asked the stanford autonomic neuro doc something like "what if my SFN doesn’t have inflammatory / autoimmune origin and I don’t respond to steroids or IVIG ? " to which my doc said “then you’d continue to work with pain management for symptomatic relief” so I my sense is they’re going to really focus on this one part, only.
Loralogic- Have you ever done a 10 min standing test at home? I did this morning and my heart rate shot up from 50 to 114, which seems to more than meet the POTS criteria. Just wondering if you had something similar but then had a negative result on the tilt table.
standing_cat- are you local or did you have to travel to/from Stanford 3 times?
local. they might be able to accommodate you if you travel though. I know a lot of people travel to them for pain management
Hi there! I did try to do the standing test, but it was always not too much of a difference in heart rate. But I thought I would get tested anyways because of my symptoms (lightheaded, dizzy, migraines etc). I believe I probably don’t have pots, but definitely I think SOME autonomic abnormalities going on for sure. The doctors just can’t put a name to why it’s happening It sounds like you are a good candidate for the testing though! With that much of a jump, they should be able to diagnose you, no problem! Stanford was really great, my insurance wouldn’t cover the QSART test…I was bummed about that!
Aubrey - sorry to hear they haven’t been able to put a name to your symptoms. As for the QSART- did you know ahead of time that the insurance wouldn’t cover it? One of my big concerns with going anywhere for testing is that I could end up with a huge unexpected bill after the fact.
I went to the Stanford pain clinic about a year ago after reading an article about EM by a doc, named Lembke associated with their clinic. All they did was some temperature testing on my legs and feet, and a bunch of questions and gave me a diagnosis of EM. My medicare covered it, and although it did not give me any suggestions for care, other than a list of meds I might try, at least I now have the Stanford name behind my diagnosis when I go to other docs.
Hi I went to the Mayo clinic last summer and had a really good experience. As someone mentioned above it was comprehensive and quick. I spent 3 days there and was given the dx of EM. I left feeling that I had the best care possible and would go back if necessary. Wishing you well.
I saw Dr. Sandroni back in 2011 at Mayo and it was a complete waste of time. Dr. Sandroni had suggested I focus on a Pheochromocytoma diagnosis, which I did for another 5 years (at the time it was pheo vs pots). Ended up going to the NIH’s undiagnosed program and they ruled out pheo, or any known NET. They had suggested dysautonomia so I ended up going to the University of Washington, in my home state. My doctor had mentioned EM within 5 minutes, as well as some dysautonomia testing.