1. < Neuropathy
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Genetic neuropathy.

Posted by lindaslegs @lindaslegs, May 13 10:24am

I feel alone and different. My great grandfather, grandfather father, father's sister, brother and myself have all had neuropathy not caused by normal reasons.
None were diabetics. It is in my feet and has traveled up to my hands and face. Meds are not working very well any more. I take neurontin, topomax and oxycodone 10 mg.
My Dr just retired and I can't find a Dr who will help me. I am so desperate.

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

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lindaslegs | @lindaslegs | May 13 10:26am

I would like to add they all died by the time they were 67. My brother died when he was 55. I am 65 and not very confident about my time left.

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John, Volunteer Mentor | @johnbishop | May 13 11:05am
In reply to @lindaslegs "I would like to add they all died by the time they were 67. My brother..." + (show)
Profile picture for lindaslegs @lindaslegs

I would like to add they all died by the time they were 67. My brother died when he was 55. I am 65 and not very confident about my time left.

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Hell @lindaslegs, Welcome to Connect. Sorry to hear that you haven't found a doctor to help after your doctor retired. I also have idiopathic small fiber neuropathy but don't think it's related to genetics. There is another discussion that you might find helpful while you wait for members with experience to respond.
-- Small Fiber Neuropathy and genetic testing?: https://connect.mayoclinic.org/discussion/sfn-and-genetic-testing/

The Foundation for Peripheral Neuropathy has some information that you might find helpful here - https://www.foundationforpn.org/hereditary-pn-qa/.

Have you looked into genetic testing for your neuropathy?

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mrmacabre | @mrmacabre | May 13 12:40pm

The only genetic conditions that have run in my family are arthritis and diabetes. My older sister, who died in August of 2020 of a massive infection at the age of 64, suffered with rheumatoid arthritis. Our parents both had severe osteoarthritis and became diabetic. My 2 younger sisters and I are all dealing with osteoarthritis, but not diabetes, so far. I'm the only one having to deal with idiopathic poly neuropathy in my feet, and as far as I know there's no family history of it. More than likely it's due to me working a very physical job for over 35 years before my body started breaking down. A family history of neuropathy is obviously something I wouldn't wish on anybody.

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