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Does anyone have Autonomic Storms
Neuropathy | Last Active: Jun 10, 2023 | Replies (11)Comment receiving replies
Thanks for your note. I have not had an adrenal issues and was tested at the University of Michigan.
This is hereditary. My son has this, my twin brother was just diagnosed with neuropathy. They 2 other brothers have neuropathy. Don’t know what side of the family this came from but I suspect it was my dads side. At my neurologist she said she has 4 Frattini’s that have neuropathy.
I hope this gives you the answer.
Replies to "Thanks for your note. I have not had an adrenal issues and was tested at the..."
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It's good you don't have Addison's. It sounds like the the responsible genetic mutation(s) is/are already clear. I hope your doctors are able to identify some sort of gene therapy or protein replacement therapy that could correct or replace your mutant SDHB (and any other mutant genes) so you can get some relief. FYI, my mutant SDHB is hereditary and, together with another mutant gene FBXL4, is responsible for my peripheral neuropathy and Addison's (and possibly my seizures). But every case is different, and treatment seems to require a custom-made approach. Praying for a good outcome for you.