Autonomic Nervous system vs dysautonomia

Posted by joannemm30809 @joannemm30809, Sep 20 7:13am

I have reviewed the autonomic nervous system threads as well as dysautonomia threads and I have not seen this topic addressed so I thought I would post it as a new thread and maybe I can get some answers because it seems like many doctors can't give me the right answer.

Several doctors feel I have an autonomic nervous system breakdown and then one other cardiologist thought I had Dysautonomia.
My question is there's always listed 15 different types of dysautonomias but I do not fit into any of the 15 categories.
So can I have autonomic nervous system problems and symptoms without having to be fit or put into one of those 15 different types of dysautonomia? I have not seen this address or answered anywhere and I've been searching and looking so I thought I would start a new thread. Thank you very much if anybody has any input regarding my question.

I don't see anybody commenting yet I hope someone does but I still cannot find out anywhere if you do not fit into the 15 categories of dysautonomia can you still have autonomic nervous system malfunction? I'm having to switch neurologist again because this neurologist in Tampa Florida has not been one bit helpful and basically pushed me off on the Mayo clinic out of Jacksonville which is 8 hours away from my house but the Mayo clinic called me last night and they have a 1-year waiting list to be seen by a neurologist at Mayo clinic in Jacksonville Florida. Like my current neurologist in Tampa Florida thinks I should suffer another one full year with these symptoms and I have any answers! And then I ask my neurologist why he has never done a small nerve fiber biopsy on me to rule that out and he said that his group of neurologists do not do that specific test and he told me to go to a different neurologist now in Tampa that does that test so I'll be starting all over again with another neurologist over these last two years.

Anyone out there with any input as far as these 15 categories of dysautonomia and might not fitting into any of those categories yet it seems like I have autonomic nervous system symptoms for almost 2 years now I'd greatly appreciate any input because I'm totally disgusted with a lot of the specialist doctors I've seen over the last two years. Absolutely pitiful. And the very good doctors at Mayo clinic have a one full year waiting list to be seen. Unbelievable. What a nightmare.

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Just a thought but have you tried doing a search on Neuropathy Commons or Google Scholar with some of your symptoms? I'm a believer in trying to learn as much as you can from reliable health sources which hopefully helps me ask better questions of my doctors and become a better advocate for my own health. Hope there are some other members with some thoughts or suggestions for you.

Here's the search results on Neuropathy Commons for dysautonomia — https://neuropathycommons.org/search/node?keys=dysautonomia
Here's Google Scholar if you haven't used it before – https://scholar.google.com/

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@joannemm30809

I don't see anybody commenting yet I hope someone does but I still cannot find out anywhere if you do not fit into the 15 categories of dysautonomia can you still have autonomic nervous system malfunction? I'm having to switch neurologist again because this neurologist in Tampa Florida has not been one bit helpful and basically pushed me off on the Mayo clinic out of Jacksonville which is 8 hours away from my house but the Mayo clinic called me last night and they have a 1-year waiting list to be seen by a neurologist at Mayo clinic in Jacksonville Florida. Like my current neurologist in Tampa Florida thinks I should suffer another one full year with these symptoms and I have any answers! And then I ask my neurologist why he has never done a small nerve fiber biopsy on me to rule that out and he said that his group of neurologists do not do that specific test and he told me to go to a different neurologist now in Tampa that does that test so I'll be starting all over again with another neurologist over these last two years.

Anyone out there with any input as far as these 15 categories of dysautonomia and might not fitting into any of those categories yet it seems like I have autonomic nervous system symptoms for almost 2 years now I'd greatly appreciate any input because I'm totally disgusted with a lot of the specialist doctors I've seen over the last two years. Absolutely pitiful. And the very good doctors at Mayo clinic have a one full year waiting list to be seen. Unbelievable. What a nightmare.

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I think I saw a newsletter from "The Foundation For Peripheral Neuropathy" that included a search engine for specialists in this field. Get in touch with them

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Thank you for that information but I was just hoping that many others on the mayo website here would have some of their own personal information regarding autonomic nervous system problems and dysautonomia.

I have not gotten any responses on it as of yet in the first time I post the question was last week and there's still zero responses so I guess there's not anybody out there that is reading my post regarding my question can you have autonomic nervous system issues without it having to be in the very stringent 15 categories of dysautonomia because I do not fit into any of those 15 categories yet a lot of my symptoms seem to be an issue coming from the autonomic nervous system.

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@davehayward1

I think I saw a newsletter from "The Foundation For Peripheral Neuropathy" that included a search engine for specialists in this field. Get in touch with them

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@joannemm30809, Here is the neurologist directory that @davehayward1 mentioned that is on the Foundation for Peripheral Neuropathy's website – https://www.foundationforpn.org/living-well/neurologist-directory/

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Ok. Thank you. I guess I'm still confused with peripheral neuropathies and if it has anything to do with what some doctors think I may have which is an autonomic nervous system malfunction but when I look that up it automatically points to dysautonomia yet I don't fit into any of the 15 categories. I was not aware that peripheral neuropathies were tied into autonomic nervous system issues.

I'm just trying to educate myself along the way and connect with other people that may know a lot more than me about autonomic nervous system issues and/or Dysautonomia since many of the neurologists here in Central Florida and the one in Augusta Georgia really did not know much about what my symptoms could be coming from.

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@joannemm30809

Thank you for that information but I was just hoping that many others on the mayo website here would have some of their own personal information regarding autonomic nervous system problems and dysautonomia.

I have not gotten any responses on it as of yet in the first time I post the question was last week and there's still zero responses so I guess there's not anybody out there that is reading my post regarding my question can you have autonomic nervous system issues without it having to be in the very stringent 15 categories of dysautonomia because I do not fit into any of those 15 categories yet a lot of my symptoms seem to be an issue coming from the autonomic nervous system.

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@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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@johnbishop

@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.

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@joannemm30809

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.

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I'm surprised the neurologist would not order a punch biopsy to help rule out or confirm a diagnosis. I'm pretty sure it's the gold standard but then I'm not a doctor and have no medical training or background. Is it possible to discuss it more with your neurologist and request a biopsy be done. Here's some background info on it's use….

"Can a skin biopsy detect neuropathy? — Skin biopsy can show the presence of autonomic neuropathy by providing a semiquantitative assessment of the denervation of sweat glands (fig 2​). This approach is more sensitive than functional examination of autonomic nerves using quantitative sudomotor axon testing." — Skin biopsy: a new tool for diagnosing peripheral neuropathy – NCBI: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1885305/

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@johnbishop

I'm surprised the neurologist would not order a punch biopsy to help rule out or confirm a diagnosis. I'm pretty sure it's the gold standard but then I'm not a doctor and have no medical training or background. Is it possible to discuss it more with your neurologist and request a biopsy be done. Here's some background info on it's use….

"Can a skin biopsy detect neuropathy? — Skin biopsy can show the presence of autonomic neuropathy by providing a semiquantitative assessment of the denervation of sweat glands (fig 2​). This approach is more sensitive than functional examination of autonomic nerves using quantitative sudomotor axon testing." — Skin biopsy: a new tool for diagnosing peripheral neuropathy – NCBI: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1885305/

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This neurologist is from somewhat of a large neurology group out of Tampa it's him and I think three other neurologists and when I informed him last week that I was being told about this small nerve fiber biopsy to rule out small nerve fiber neuropathies He said he nor the other three neurologists in his office do that test and that I would have to find a neurologist that does it. He gave me a name of a neurologist but of course I'm then starting all over again with a neurologist as a first time new patient and the wait list is like 5 months and I'm just so tired of this. I cannot believe that a large neurology office in Tampa Florida and they do not do this small nerve fiber biopsy test. It's just absolutely ridiculous I've been run ragged for almost 2 years now with being misdiagnosed one doctor says one thing and other doctor denies what the other doctor has for a diagnosis it's ridiculous and I'm stuck in the middle. You don't know how sick I am I'm just sick inside and out of it all. I feel like I'm just a dog chasing my tail with these doctors.

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@joannemm30809

I don't see anybody commenting yet I hope someone does but I still cannot find out anywhere if you do not fit into the 15 categories of dysautonomia can you still have autonomic nervous system malfunction? I'm having to switch neurologist again because this neurologist in Tampa Florida has not been one bit helpful and basically pushed me off on the Mayo clinic out of Jacksonville which is 8 hours away from my house but the Mayo clinic called me last night and they have a 1-year waiting list to be seen by a neurologist at Mayo clinic in Jacksonville Florida. Like my current neurologist in Tampa Florida thinks I should suffer another one full year with these symptoms and I have any answers! And then I ask my neurologist why he has never done a small nerve fiber biopsy on me to rule that out and he said that his group of neurologists do not do that specific test and he told me to go to a different neurologist now in Tampa that does that test so I'll be starting all over again with another neurologist over these last two years.

Anyone out there with any input as far as these 15 categories of dysautonomia and might not fitting into any of those categories yet it seems like I have autonomic nervous system symptoms for almost 2 years now I'd greatly appreciate any input because I'm totally disgusted with a lot of the specialist doctors I've seen over the last two years. Absolutely pitiful. And the very good doctors at Mayo clinic have a one full year waiting list to be seen. Unbelievable. What a nightmare.

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Yes you can still have I have both. Find a neurologist who will do the skin biopsy.

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