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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)Comment receiving replies
Hello, I'm new to this website and am in hopes that someone will respond to my post. I was recently diagnosed with polyneuropathy. Three weeks ago, I had an appointment with my PC doctor and told her that at night I'd been having burning in my lower legs and a crawly feeling in the soles of my feet. She diagnosed polyneuropathy and prescribed gabapentin. I have a lot of allergies to drugs and the gabapentin burned my stomach and causes itching all over my body, I stopped taking it. I haven't told my doctor that I stopped and been dealing with the discomfort by using topical gel and ice pad socks to enable me to sleep at night (I have no pain during the day.) I know nothing about this disease and don't know what to expect. I've also read that people who have this disease can suffer with terrible pain and crippling effects, so, treatment should be started as soon as possible. I have polymyalgia, giant cell arteritis, and rheumatoid arthritis as well as severe varicose veins. All that combined causes a lot of different symptoms so I'm wondering if I've been misdiagnosed since my nighttime symptoms are not all that bad. What are your thoughts? Any insight would be greatly appreciated. Thank you.
Replies to "Hello, I'm new to this website and am in hopes that someone will respond to my..."
My peripheral neuropathy symptoms initially only occurred at night. Unfortunately, months later they progressed to also occurring during the day. You may wish to ask your primary care doctor now for a referral to a neurologist. There can be a long wait to see one and that way you will receive timely care.
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Hello @anya40, Welcome to Connect. I have small fiber peripheral neuropathy, degenerative arthritis, PMR (in remission now) and a few other conditions. I can understand why you might feel you may have been misdiagnosed. It's good that you are adovating for your health and learning as much as you can about the conditions. If it were me, I think I would want to discuss my thoughts with my primary care doctor and make sure they know the treatment they started you on is not helping. I also was started on gabapentin and stopped taking it but I talked with my doctor immediately after I stopped and we had a conference with her team of doctors about the treatment with gabapentin. When I told them I don't have the pain with my neuropathy and that I only have numbness, they told me gabapentin will do nothing to help with the numbness and agreed that I shouldn't be taking it. I shared my story in the Member Neuropathy Journey Stories: What's Yours? discussion here: https://connect.mayoclinic.org/comment/310341/
Here are a couple of websites that I've found helpful on learning more about neuropathy:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/newly-diagnosed/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
You might find the following site helpful if you want to plan the conversation with your doctor - https://www.patientrevolution.org/tools
Is discussing your thoughts about a possible misdiagnosis with your doctor something you might consider doing?