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Colleen Young, Connect Director avatar

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 23 hours ago | Replies (6619)

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Thank you. I was able to find that list. My next question is does anyone in this chat group feel that we as patients are suppose to act as our doctors? As mentioned, I have been reading and posting here for over 1 year and I feel no more enlightened than when I began. I find all of the information very, very confusing ie. what vitamins to take, diet, etc., etc. I am no rocket scientist admittedly but their must be a better way of sifting through all of this information to actually understand what am I suppose to do to at least slow down this progression of PN. I am scared. I do not want to wind up in a wheelchair or have to have an amputation. Honestly, it is very frightening to me and I thought that if I at least found a doctor who specialized in PN, I could pare down the info and try to follow his/her advice. I cannot understand what to do, what to take, etc., etc. I do understand that PN is complicated but surely a neurologist who specializes in this disease can help me wade through all of this info and start doing what is best for me. I am willing to try different solutions but I cannot be expected to understand what to do!!!! Very, very worried in Massachusetts!!!!

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Replies to "Thank you. I was able to find that list. My next question is does anyone in..."

If it’s any consolation I was terrified when I developed neuropathy 6 years ago and thought I’d be using a walker by now. But despite my increasing parathesia, I’m not completely numb and can still walk comfortably as long as I’m not barefoot. I developed neuropathy after knee surgery, but my recent EMG shows my S1 L5 discs are causing it and it’s actually Radiculopathy. In any case, I think many people are just living actively with neuropathy even after years and it’s only in extreme cases you would need a wheelchair.