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Old 06-25-2018, 11:00 AM #1
wernerjudith wernerjudith is offline
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Default Strong Familial Connection re: Idiopathic Neuropathy

Hello to All,
This is my first post, as well as my first day on this site...so glad to have found you!
Have any of you who have been dealing with PN, found that other family members are also affected? I am one of seven, and FIVE of us have PN. Only one brother sought medical treatment. He went through a battery of testing, only to get a diagnosis of "idiopathic neuropathy", and not really any help for the condition at all.
Wondering if anyone has found an alternative treatment which has made a difference????
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Old 06-25-2018, 09:47 PM #2
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I was diagnosed as having "idiopathic neuropathy", and coincidentally my brother started experiencing neuropathy the same year. However, my brother has type 2 diabetes and I do not.
My Dr. put me on Gabapentin, assuring me that it would be the 'fix'. But he wasn't really listening to me, I am just experiencing numbness, and not the burning stabbing sensations that Gabapentin would address. I took the Gabapentin for 3 weeks even though I knew it would not aid the numbness; it was making me 'dull headed', and I couldn't afford to be that way at work, so I stopped. Have not heard of any cure for the numbness, so I've just gotten used to it. Thankfully the PN hasn't gotten worse.
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3/1/2011- diagnosed with Peripheral Neuropathy
April 2012- Treated for Hepatitis C, achieved SVR
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Old 06-25-2018, 11:20 PM #3
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Hi wernerjudith

Welcome to NeuroTalk .

Familial neuropathies are not common.

Here are a couple of links which might help you.

Familial amyloid polyneuropathy. - PubMed - NCBI

Types of Peripheral Neuropathy - Hereditary Neuropathies
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Old 06-26-2018, 07:56 AM #4
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Thanks so much for posting these links...I will certainly check them out!
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Old 06-28-2018, 12:26 PM #5
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3 siblings and neither my mother or father have/had it. Genetic testing can link the PN to family, but it's pretty much a waste of time and money because in the end Genetic and Idiopathic are the same thing....."We do not know the cause".

Most of us here(like myself) have found some relief by taking B12 and other related vitamin supplements that arrest or slow down it's progress. Read the entire sticky above by MrsD...very enlightening.

The best thing about this forum is that you can match symptoms with those here that have had a limited success in self treatment with the over the counter supplements which are relatively cheap.
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