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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

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@jesfactsmon

Hi Rachel, in the spirit of John's desire to keep the "Share you neuropathy stories" discussion cleaner, here is my reply to your last post from over there made on 5/13 (John, @johnbishop sorry for posting replies over there initially):

Rachel, you mentioned that you do have some ability to walk. That is VERY good. Hopefully that will not get worse so you can at least mobilate to do at least the basics around home. But odd that the legs developed this condition. Sounds similar to MS. If it were MS and they have MRI'd your head since it developed they should have noticed lesions. If it was never looked into before this you might bring it up with your PCP. You have also mentioned before that your hips or upper legs have on occasion sort of frozen up like stone or something, which must be related right? If this started from a b12 deficiency it would seem like this stuff would all be getting better right, assuming you are absorbing enough b12 now? Perplexing. Must be more going on, no? (Right, you're saying, but what???!!!). God help anyone who develops either a nerve disease or an endocrine related disease. The two great unknowns to medical science. I'm sure advances are coming, but in our lifetimes? Maybe not.

One thing you and my wife have in common it sounds like it perfectionistic tendencies. As well as being a tad driven (busy busy busy). This was always my wife, in younger days. Illness has slowed her down and softened her perfectionism (somewhat). It seems like there may be a connection between those traits and the illness that has befallen you both. One thing about illness, it gets your attention, whether you like it or not. You have to stop and pay attention, which in a way is a good thing, or would be without the steep price tag. . Another commonality you have with Linda is corneal disease. She was diagnosed in 2006 with Fuchs dystrophy, and the doc told her she would eventually have to have corneal implants. Though her sight has worsened since then her current eye doc has told her that she should not worry about it until it's time for her to have her cataracts removed to have her corneas replaced. My wife's body and my old Datsun 710 which I owned back in the eighties have a lot in common. They are/were both broken down in a lot of ways and much has had to be jury-rigged to keep them both going. They both have (or had) long medica/mechanical rapsheets. Linda's has grown and grown as it sounds like yours has, though in your case it's happened much faster, 4 years as opposed to, how many for Linda, 20? 30? Anyway, you both are inspiring to me.

I will end for now. Best, Hank

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Replies to "Hi Rachel, in the spirit of John's desire to keep the "Share you neuropathy stories" discussion..."

Good morning Hank
Thanks for reaching out in this thread. Amazing about Fuchs dystrophy! Its uncommon and I've inherited it from my father who, in his 60's had full corneal transplants. I progressed quicker unfortunately, but knock on wood, my vision is incredible now. Amen! The photophobia remains but I decided long ago to accept that over poor vision. MS was a concern at one point but my spinal tap ruled out auto immune diseases. I'm glad to be Mayos guinea pig for possible better conclusions. I've often wondered if my health conditions were a round about way of slowing me down and making me pay attention to myself for a change verses everyone else. Not only has this been a physical journey but, a mental one as well. Regarding Small Fiber Neuropathy and its underlying cause...yes, b12 has been regulated and specific symptoms have vanished, however, I feel I've been left with some pretty poor "souvenirs" which makes me feel idiopathic in the end. Finding my underlying cause has not been this huge revelation in my so called fix. I feel like the damage has been done. And I love your analogy of a broken down car! I agree. I've referred to this myself actually and thought myofacial release is like going in for a tune up to help keep the car running, and healthier foods is like putting good gas in your car, etc, etc...
Be well today Hank and if you (or Linda, via you) ever want to talk further (so we don't completely bore the other readers - wink, wink) please feel free to private message me.
Rachel