Dysautonomia studies and ANS issues

Posted by joannemm34293 @joannemm30809, Dec 21, 2021

Not too sure if anybody will answer this and I know I've asked this question before about 3 months ago and did not see any responses but I will try again.

Does the Mayo clinic in Jacksonville have any in-depth research or doctors that are skilled at dealing with possible dysautonomia patients and the autonomic nervous system issues that dysautonomia creates????
It seems like a huge majority if not all of doctors even in specialist fields like neurology have really no grasp or idea of how to deal with dysautonomia and I think that's because there's a lack of research or a lack of trials that are being done. It's a very debilitating totally debilitating disease if you want to call it a disease. But I can really get no real feedback from any doctors over the last 2 years it's like none of them are up to date on this. Very sad.

Interested in more discussions like this? Go to the Brain & Nervous System group.

I really don't have an answer for your question @joannemm30809 but wanted to share these references in case you have not already seen them.

— Dysautonomia Support Network: https://www.dysautonomiasupport.org/
— Southeast Provider Directory: https://www.dysautonomiasupport.org/southeast-provider-directory

Here is a research page I found for familial dysautonomia.
— Treatment Breakthroughs From The Fordham Research Lab: https://fdnow.org/breakthroughs/

Hoping you find some answers…

REPLY

Thank you for all this great information. I just wish that all these specialists I've seen over the last two years knew a lot of this information that maybe they could have been helping me along the way. They just tell me to go home and eat a lot of salt and write a recumbent bicycle. But they don't even know for sure if I have 100% if I have dysautonomia They have no idea.

I do not fit into any of the 15 categories of disorder know me. And the familiar disorder know me I would have known by now if I had that because I'm 61 years old and I never had any of the precursor symptoms of familiar disorder know me while growing up or even a teenager or an older adult and I'm 61 years old now. But I don't fit into any of the other categories either. And I did not fail the tilt table test so I do not have pots. One cardiologist said I have vasovagal the other cardiologist said I had dysautonomia and a Neurologist said I do NOT have any of those diseases but I have chronic anxiety problems. So for two years I've spent a ton of money and I'm still at square one.

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@joannemm30809

Thank you for all this great information. I just wish that all these specialists I've seen over the last two years knew a lot of this information that maybe they could have been helping me along the way. They just tell me to go home and eat a lot of salt and write a recumbent bicycle. But they don't even know for sure if I have 100% if I have dysautonomia They have no idea.

I do not fit into any of the 15 categories of disorder know me. And the familiar disorder know me I would have known by now if I had that because I'm 61 years old and I never had any of the precursor symptoms of familiar disorder know me while growing up or even a teenager or an older adult and I'm 61 years old now. But I don't fit into any of the other categories either. And I did not fail the tilt table test so I do not have pots. One cardiologist said I have vasovagal the other cardiologist said I had dysautonomia and a Neurologist said I do NOT have any of those diseases but I have chronic anxiety problems. So for two years I've spent a ton of money and I'm still at square one.

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Dont accept the diagnosis of chronic anxiety. I heard that so many times even from the neurologist who found my diagnosis of autonomic small fiber neuropathy . He didn’t believe me not even for a second. He kept eluding to anxiety but a last minute thought he decided to order a skin biopsy. He only ordered it because I have severe urine retention which requires bilateral stimulators

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I have Hyperadrenergic POTS. And Dysfunction of the Autonomic Nervous System. I’m not a Mayo patient, however, that was an option when I was referred to a specialist. I ended up at Vanderbilt Autonomic Clinic. I can’t speak for Mayo but Vanderbilt saved my life.

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@bcrazy1

I have Hyperadrenergic POTS. And Dysfunction of the Autonomic Nervous System. I’m not a Mayo patient, however, that was an option when I was referred to a specialist. I ended up at Vanderbilt Autonomic Clinic. I can’t speak for Mayo but Vanderbilt saved my life.

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Hello @bcrazy1, Welcome to Connect. It is really good news to hear that Vanderbilt Autonomic Clinic was able help diagnose and treat you. Do you mind sharing a little more about the treatment that helped you?

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@johnbishop

Hello @bcrazy1, Welcome to Connect. It is really good news to hear that Vanderbilt Autonomic Clinic was able help diagnose and treat you. Do you mind sharing a little more about the treatment that helped you?

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Sure! It was a simple medication. Methyldopa. It worked incredibly well for 7 years. Then they quit making it. I’m currently on clonidine which helps but not as well as methyldopa did. I have to agree with OP that this is very disabling. Most people think about POTS as a nuisance. I’ve been basically bedridden since stopping methyldopa in April 2021. I’m hoping the clonidine is going to level out at some point, otherwise it will be on to the next medication. HyperPOTS is WAY under studied, as is Autonomic Dysfunction in general.

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