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Increasingly Difficult to Accept Peripheral Neuropathy
Neuropathy | Last Active: Aug 27, 2023 | Replies (163)Comment receiving replies
I completely empathize with you. I developed neuropathy at 24 years of age in 1994. It was a nuisance until I got the COVID vaccine which has ruined my life. I have a good job (but disability on the horizon), lovely wife, terrific boys, nice home. And small fiber neuropathy is so debilitating it outweighs everything.
Truth is, is has sapped my will to carry on. I’m just so tired of fighting. I’m exhausted. Tears are streaming down my face now. I want to live. I just don’t want to live like this.
As if that is not cruel enough, I’m virtually certain that my eldest son has SFN and I also suspect one of the younger ones does as well. How is a person expected to have the strength and courage to endure this themselves virtually their entire life, but also bear witness to their children suffering the same fate? It’s all too much.
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I too suspect that one of my sons is developing SFN. One of my sisters has it, but we did not develop symptoms until our 50’s. I’m sure that my Tegretol (for complex partial seizures) masked my symptoms for 25 years, until I stopped taking it in 2014.
I live near a Clinic for Genomic Research, and they were excited to hear my story and do genomic testing. Frustrated that they didn’t find any genetic variants YET. The lab still has my results, and they assured me that I could hope to one day get a phone call, as they discover more and variants. I feel like someone would be excited to test you and your sons (if they haven’t already). I visit UAB, and we are all pleased and amazed that resuming Tegretol has changed my life - literally. Probably because it works with the unknown variant that I have. Sure, my life is not anywhere near normal, and I am now on disability - but I’m interested in experimenting with my doctors.
Sending hope your way -