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Dysautonomia

Neuropathy | Last Active: Feb 25, 2023 | Replies (7)

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@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.

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Replies to "Hi @julbpat, I posted this is another similar discussion that might be helpful. — Dysautonomia Support..."

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.