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Anyone else hear about genetic neuropathies?

Aug 01, 2015 10:31 AM

I know there was a discussion about genetics on here earlier, but I found out some information recently that is interesting.

So, my aunt (my mom's identical twin) and I might share health issues. She has been to OHSU, and at a recent appointment the neurologist said the same thing about "neuropathy, dystonias". There was a test for one kind, but it came back negative. She later got told that there's a certain genetic neuropathy, but it costs around a million doctors. I'd guess it is being researched.

Anyway, my aunt and I are having a similar experience, just at different ages.She's currently in a wheelchair, taking Lyrica and some other painkillers. They're turning her into a zombie. I had the same reaction to these drugs. I'm beginning to wonder, is it really genetic? If it is, trying some of the meds I take might help her. Could she be out of a wheelchair? It may be a false hope, but I feel like I have to try.

I miss my aunt a lot. She had a awesome laugh, and was friendly to so many people. I hate that she's going through the same things I have. She recently recieved a diagnosis of fibromyalgia, and now most docs have given up. I'm a kid. My dad's an extreme geek, in a scientific sense. I may have access to options my aunt doesn't have, but I really want her to get better.

LDN is more commonly helpful for nerve disorders, but because I reacted amazingly from DMSO, I'm wondering if it might help her.

Has anyone else heard of genetic neuropathies? My current neuropathies thinks I don't have RSD/CRPS, but it's gone into remission now so he's kind of right. What if this genetic neuropathy is my "original neuropathy,"?

Aug 01, 2015 11:00 AM

I've never heard of it. 🙏🌼

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