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rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Jan 22 1:27pm | Replies (2664)

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Hi – I’ve had peripheral neuropathy in my feet and now legs for a little over 10 years. I’m probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don’t know the root cause. I have an appointment for May 2nd with the neurologist and I’m hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).

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Replies to "Hi - I've had peripheral neuropathy in my feet and now legs for a little over..."

Thanks for the links. And keep us informed on how your neurologist turns out. You have had neuropathy for a long time. Mine has been about 4years and seemingly came out of nowhere. Take care.

John, My neuropathy was caused by vasculitis (GPA Wegeners) after extensive nerve testing including surgery to remove a portion of the nerve in my ankle for biopsy (I don’t remember the exact terminology). That was an extremely painful process & recovery as well. My nerves are mostly damaged and not much chance of rejuvenation. Catching it early, especially with Wegeners (incureable) is crucial to your future over-all health. I hope this helps and you can determine what is causing the neuropathy. Keep us posted. 

Thank you for your reply. The one thing I’ve learned from everyone is to keep searching and trying new treatments until you find something that works since most only work for 20 to 25% of people with neuropathy. Hoping you are able to get some relief too.

Bob, I understand how those who need help, and those who have abused the
system has made it difficult for the one’s who are in need. My daughter is
a nurse and See’s a lot of people who abuse there lives with pain meds. I
do a lot of counciling. My husband and I minister. You wouldn’t believe the
people who have become addicted to pain meds. It’s something some can’t
help. And you have those who does it for recreation. I have to take pain
meds like most of the the ones on this connection, are won’t be able to
walk, much less get out of bed. I don’t have insurance, so things can get
pricey! I am looking into some right now. I’ve been sick for years, but the
last 2 years have been rough. I try to get things done when I have good
days. I do know that prayer keeps me from being down and blue, which pain
and suffering can cause. I don’t think I go through what you go through are
the others on the connection. My heart goes out for all of you.


Thanks for the links. Are there sources for senior citizens with peripheral neuropathy? Any of them somewhat more technical? Thanks.

Thank you John, for the two links. Have searched the Web for several weeks and never came up with these organizations!! I am new to the neuro problem (6 mo) and searching for answers/solutions if they exist. Cannot get into see a neuro doc till Jan 2020. With Appreciation — Di

Hello John, since 2015 I've been dealing with polymyalgia, giant cell arteritis, rheumatoid and osteo arthritis. That was bad enough, but now I have neuropathy. After being diagnosed a few weeks ago I joined this group and began reading a lot of posts. After working up enough courage I posted a comment of my own and you were the first to respond (for which I am very grateful since I know nothing about this condition and am very afraid) I've since found a team of neurologists who treat people with neuropathy and was feeling a little more hopeful. But from what I was reading I thought they would start me on Gabapentin since that appears to be the gold standard of treatment. However, I was sent for a lot of bloodwork, and began a series of nerve blocks. I haven't read anything on this website that speaks to this sort of treatment. Now I'm wondering if this is another blind alley since it took my going to five different specialists before anyone mentioned neuropathy. I guess my question to you is: – Is there any kind of regular treatment for this disease? Does it ever go into remission? Or is this a lifetime of pain, discomfort, anxiety and never knowing what comes next. From what I'm reading it appears as though after the original diagnosis you spend the rest of your life suffering to one degree or another and you never get back to a "Real Life."