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Autonomic Nervous system vs dysautonomia
Neuropathy | Last Active: Jun 1, 2022 | Replies (45)Comment receiving replies
@joannemm30809, Sorry you haven't had any responses but there have been a lot of folks who have seen your post so hopefully someone can relate and share their experience. Have you seen these older discussions? Some of the members may still be following if you see a post that you can relate to or that provides information you find helpful.
-- (2021) How do I keep blood pressure in check with Dysautonomia?: https://connect.mayoclinic.org/discussion/how-do-i-keep-blood-pressure-in-check-with-dysautonomia/
-- (2016) Dysautonomia/Syncope: https://connect.mayoclinic.org/discussion/dysautonomiasyncope/
-- (2012) Treatment options for Dysautonomia: https://connect.mayoclinic.org/discussion/in-2011-i-was-diagnosed-with-dysautonomia-it-is-not-pots-but/
I just posted an upcoming Foundation for Peripheral Neuropathy webinar on genetic testing that you may interesting if not helpful.
FPN Webinar: Hereditary Neuropathy and Genetic Testing
Thursday, Sep 30, 2021 2:00 PM – 3:00 PM CDT
Registration Link — https://register.gotowebinar.com/register/8070190365204298253
I'm not able to answer your question on if you can have dysautonomia if you don't fit in any of the categories. Have you been diagnosed with dysautonomia or had the tilt table test? You might find this page helpful if you have not already seen it -- https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
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I had tilt table and it was negative. One cardio Dr in GA two years ago felt I might have dysautonomia but two other neurologists and my cardio doctor now in FL are not sure if I have dysautenonia, most said probably not but most my symptoms that affect me from head to toe appear to be some sort of neurological malfunction.
My recent Neuro doctor said regarding my muscle twitching that I have from head to toe that I have benign fasciculation syndrome and not ALS because I've had the test that ruled that out. I've had every blood test you can think of and lots of other tests yet the endocrinologist here in central Florida and a neurologist from Tampa and my cardiologist here in Lakeland all point in a different direction as to what they think it might be but there's nothing definitive not ever. So my neurologist here who for some reason does not do the small nerve fiber biopsy to rule that out has referred me to the Mayo clinic in Jacksonville Florida and they have over a 1-year waiting list to see a doctor. That's why I'm taking the ball into my own hands and I'm going to start researching and find out what it is because it's definitely something that almost 2 years later I'm still dealing with it. And I'm so sick of it. What is more frustrating is that one doctor cardio doctor here in Lakeland Florida said I had Vasovagal yet I did not fail the tilt table test but then another cardiologist in that same office said no you do not have vasovagal and he told me to go back to my neurologist. So I can't get any of these doctors even from the same office to agree on anything.