1. < Neuropathy

Dysautonomia

Posted by julbpat @julbpat, Feb 21, 2023

I’m starting this discussion because tomorrow I am going to the Dysautonomia Clinic about two hours away for an extensive evaluation. Cardiac echo, stress test, tilt table, and some others that I don’t recognize. I fought this for a long time, just like I fought the neuropathy testing.
Eight years ago, after much suffering and an abrupt onset of terrible pain and subsequent life changes, I was diagnosed with fibromyalgia. As the years went by, I just knew that there was something else wrong with me. I got my SFN diagnosis one year ago, with skin biopsies.
Now I’ve had to admit that SFN doesn’t cover all my symptoms. After finally getting a copy of The Dysautonomia Project, reading it a few times, underlining certain sentences (sipping water constantly, unable to stand for 30 minutes, dreading things like shopping, heart rate 120’s) I had to admit how much my life has and is slowly changing, so slowly at times that I don’t really notice it while it’s happening.
Although I don’t want another diagnosis that confirms that yet another part of me is broken (my autonomic nervous system) I am relieved to be able to spend three hours tomorrow with medical professionals who have dedicated themselves to this subject, and might offer me some hope.
I’m sure John can find some links to this subject to share!
I’ll keep you posted.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 21, 2023

Hi @julbpat, I posted this is another similar discussion that might be helpful.

— 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 at your upcoming appointment. Looking forward to your update.

REPLY
1 reply
drmeb | @drmeb | Feb 22, 2023

Hello Julbpat,

I am sorry that you are facing these health challenges. I have dysautonomia also, linked to my joint hypermobility/Ehlers-Danlos. There are a growing number of articles recently about the higher incidence of neuropathy among those with EDS. I also notice that when I am having a flare-up of my JHM, my neuropathy becomes worse. Your two conditions may be related. However, recognition of the link has not led to treatment options.

I wish you the best on your journey.

REPLY
nanimann | @nanimann | Feb 24, 2023
In reply to @johnbishop "Hi @julbpat, I posted this is another similar discussion that might be helpful. — Dysautonomia Support..." + (show)
@johnbishop

Hi @julbpat, I posted this is another similar discussion that might be helpful.

— 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 at your upcoming appointment. Looking forward to your update.

Jump to this post

Thank you John for all those helpful links. Last year, my neurologist diagnoed me with SFN and Dysautonomia (Orthostatic hypotension). The doctor ordered 30-40 HG compression, abdominal binder and low dose of mestinon (pyridostigmine). I would greatly appreciate any helpful comments any of you could offer that answer any of the following questions:
1.) Any suggestions on what abdominal binder to buy? I found the Leuder brand to be uncomfortable.
2.) Any recommendations on which brand(s) of compression garments to wear and where on-line to buy them? I've tried Jobst toe-less pantyhose (purchased them on-line and through a local medical supply pharmacy store). The Jobst knee-highs kept falling down to my calf.
3.) Does Spanx work like lower-grade medical compression socks/pantyhose?
4.) Anyone have experience taking mestinon (pyridostigmine)?
5.) Do you know of any links to dysautonomia exercise videos?
6.) Any recommendations on filing an appeal to the insurance company to cover IViG?

Thanks for your helpful input. I wish you all many years of living full lives in less pain. Thank you for your support.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 24, 2023
In reply to @nanimann "Thank you John for all those helpful links. Last year, my neurologist diagnoed me with SFN..." + (show)
@nanimann

Thank you John for all those helpful links. Last year, my neurologist diagnoed me with SFN and Dysautonomia (Orthostatic hypotension). The doctor ordered 30-40 HG compression, abdominal binder and low dose of mestinon (pyridostigmine). I would greatly appreciate any helpful comments any of you could offer that answer any of the following questions:
1.) Any suggestions on what abdominal binder to buy? I found the Leuder brand to be uncomfortable.
2.) Any recommendations on which brand(s) of compression garments to wear and where on-line to buy them? I've tried Jobst toe-less pantyhose (purchased them on-line and through a local medical supply pharmacy store). The Jobst knee-highs kept falling down to my calf.
3.) Does Spanx work like lower-grade medical compression socks/pantyhose?
4.) Anyone have experience taking mestinon (pyridostigmine)?
5.) Do you know of any links to dysautonomia exercise videos?
6.) Any recommendations on filing an appeal to the insurance company to cover IViG?

Thanks for your helpful input. I wish you all many years of living full lives in less pain. Thank you for your support.

Jump to this post

Here is an exercise video YouTube channel that might be helpful:

https://www.youtube.com/@dysautonomiamovement/videos
REPLY
1 reply
julbpat | @julbpat | Feb 25, 2023
In reply to @nanimann "Thank you John for all those helpful links. Last year, my neurologist diagnoed me with SFN..." + (show)
@nanimann

Thank you John for all those helpful links. Last year, my neurologist diagnoed me with SFN and Dysautonomia (Orthostatic hypotension). The doctor ordered 30-40 HG compression, abdominal binder and low dose of mestinon (pyridostigmine). I would greatly appreciate any helpful comments any of you could offer that answer any of the following questions:
1.) Any suggestions on what abdominal binder to buy? I found the Leuder brand to be uncomfortable.
2.) Any recommendations on which brand(s) of compression garments to wear and where on-line to buy them? I've tried Jobst toe-less pantyhose (purchased them on-line and through a local medical supply pharmacy store). The Jobst knee-highs kept falling down to my calf.
3.) Does Spanx work like lower-grade medical compression socks/pantyhose?
4.) Anyone have experience taking mestinon (pyridostigmine)?
5.) Do you know of any links to dysautonomia exercise videos?
6.) Any recommendations on filing an appeal to the insurance company to cover IViG?

Thanks for your helpful input. I wish you all many years of living full lives in less pain. Thank you for your support.

Jump to this post

Regarding abdominal compression, I read that Spanx (or less expensive equivalent) will work.
Knee high compression socks - I ordered some from Amazon. The reviews are very helpful, and you can post questions. Also can return them! I ordered toe-less in a fun stripe!

REPLY
julbpat | @julbpat | Feb 25, 2023

So my appt was a long 4 hours, but very thorough. I saw Dr Paula Moore in Birmingham, Al.
I passed all the tests (cardiac echo, treadmill, tilt table) but didn’t do as well on the Vitalscan portion. This had to do with different breathing patterns, standing and sitting, while being monitored. I knew I wasn’t going to “pass”, because I watched my bare foot turn purple after the Valsalva maneuver portion. Hmm.
Dr Moore gave me some instructions, having to do with water intake, pre-rising activities to start my morning better, compression knee-his, etc.. She also said something surprising, which is that all SFN patients have Dysautonomia by definition - problems with autonomic function, which is mediated by small fiber nerves.
I am waiting to get a full written report so I can get the full picture. It was a lot of information to digest. But I don’t have POTS, and don’t have severe orthostatic issues.

REPLY
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