Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@pkindron

I never heard of a laminectomy -?

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I had a Laminectomy done in Jan 2020 on L3-5 & I was doing well & becomming pain free (in that area of of spine). On march 12, 2020 i got my second of the first two covid shots & went through 3 days of chills & sweats that never really stopped, just changed. Went through all the "rule out" tests & finally saw Neuro & got skin biopsy & SFN Dx in Sept 2020.

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Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

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@donnagautreaux

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

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Hi Donna @donnagautreaux, Welcome to Connect. I'm glad you found Connect. It's normal to have anxiety about the unknown especially when you are diagnosed with a condition like neuropathy. One of the best things you can do to help yourself is become your own advocate and learn as much as you can about the condition and available treatments. There are 2 sites that I really like for learning more about neuropathy -
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

I tend to agree with you about bulging discs causing some neuropathy symptoms by compressing the nerves. Here's some information on the topic:
-- Radiculopathy: https://www.hopkinsmedicine.org/health/conditions-and-diseases/radiculopathy

When I was diagnosed, I only had numbness in the feet and legs which I let drag on for 20+ years before seeking a diagnosis. My primary care doc tried gabapentin but I only took it for a week and it didn't help so I stopped taking it. Then after a referral to a neurologist and a diagnosis of idiopathic small fiber peripheral neuropathy the neurologist told me what I already knew - there are no medications that help with the numbness. That started my journey here on Connect back in 2016. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I don't know if you will ever feel somewhat normal again but what I can tell you is that there is a new normal and I'm sure you will be OK once you find it. There is another discussion which I think you might find helpful.
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Have you heard of Myofascial Release Therapy?

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@soonerchris

My 79 year old mother is dealing with neuropathy. I see commercials daily about clinics for neuropathy. Are these legit or snake oil?

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Neuropathy is not curable.

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@hopeful1953

My diagnosis is PNS.
I understand the tingling and burning that you are experiencing. To start, I am sorry to here of your condition. I was unable to walk. My neurologist prescribed low doses of Lamictal and increased milligram slowly. 15 years after the onset of this condition rarely do my feet burn. I continued my care with the Neurologist that first started my case.
Wishing you the best.

@Hopefully53

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I live in the Chicago area an my pn symptoms always seem worse. Have you had that experience.

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always seem worse in the winter I meant to say

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@gbrodnan1945

I live in the Chicago area an my pn symptoms always seem worse. Have you had that experience.

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I experience deterioration on daily basis. Did everything possible but have not been able to stop the rapid deterioration

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@donnagautreaux

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

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I am 51, fit, and having similar symptoms that began in November. My MRI was normal. Did your doctor check your Vitamin B-12 levels? He probably did, but low B-12 can cause these symptoms and is not part of routine bloodwork. I feel that this has contributed to my symptoms. My neurologist is also testing me for lymes and autoimmune diseases when they recheck my B-12 levels in a few weeks. A nerve study is also in my near future, but after seeing my primary care physician, obgyn, a cardiologist, neurologist, with numerous tests and a trip to the ER, I needed a break. I hope that you can get some answers and relief as I know how frustrating and worrisome this is.

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Thank you for your reply. My B-12 (as far as I know), has not been checked. But my neurologist is running numerous blood tests. I understand you getting tired of seeing doctors….. I’ve been doing the same thing. I went through all the heart testing last week with my cardiologist, and have been to numerous other doctors and testing as well. I’m exhausted, but I will fight this… whatever is causing these symptoms. Thank you got your support and understanding!

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@donnagautreaux

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

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Thank you so much for the information!

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