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Looking to connect with people who have non-diabetic neuropathy

Neuropathy | Last Active: Jul 14 1:33pm | Replies (960)
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@yojimbob

Hello fellow sufferers ,
I am actually a little surprised to find such a large number of people with idiopathic peripheral neuropathy. Mine started about 9 or 10 years ago . It was manageable with B vitamins and gabapentin when the stabbing pains occurred , which had been lessening. Went to a doctor for a touch of toenail fungus on one toe . He told me to stop taking the b vitamins and gave me itraconazole for the fungus . Wish I had never gone to the doctor . After 2 nights of the anti fungal I was awakened at 3am with my feet and calves seizing up like one giant cramp . It was VERY painful and lasted hours . I have since stopped the drug and now have 0 feeling in my feet and halfway up my legs . I went from mild neuropathy to severe neuropathy in one night . My advice to those who suffer with this DO NOT take itraconozole . I’m not sure if this will improve with time but from what I glean it only gets worse never better . Not going back to that Dr .
I used to take 300 mg gab every once in a while for pain . Now I’m taking 600 every 8hrs and getting little relief . The question I have is what do I have to look forward to when this gets worse and spreads ? And how long until one is a cripple ?

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Replies to "Hello fellow sufferers , I am actually a little surprised to find such a large number..."
John, Volunteer Mentor | @johnbishop | Sep 18, 2022

Hello @yojimbob, Welcome to Connect. It took me a minute but I did crack a smile when I read your member name. I think your question is one we all think about as we try to adjust to our new normal and figure how to deal with this neuropathy beast. The problem is that the causes and symptoms are many, we are all different and what works for one doesn't always work for others. That said there is a lot of experience here on Connect to tap and learn what has helped each of us. I have idiopathic small fiber peripheral neuropathy but only have numbness with a little tingling. I shared my story in another discussion here:

-- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/comment/310341/
My best advice is to learn as much as you can about your conditions and what the available treatments are that might provide relief. Here are my two favorite sites for learning more.

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

Have you looked into any complementary or alternative treatments for neuropathy?

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