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?

@vradifegari

Hello
Have any of you experimented pain along one only side of the body, since the left or right side of your head, face, teeth on to the fingers of foot? I mean, hole lateral pain. It start happening to me since my last acute pain crysis.

Thank you

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Yes, mine is on my left side from the waist up,down my left arm and the back of my head and my neck! It never stops

Liked by Leonard

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In reply to @resawaller
Good morning
What tests doctors indicate to study and mesure your lateral rute of pain?
Thank you very much for answer.

Liked by Leonard

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@contentandwell

@margottaylor I don’t think the ibuprofen actually did cause it but it’s interesting to hear that it can cause liver problems. They said my cirrhosis was non-alcoholic cirrhosis caused by fatty liver – I was quite overweight at one point. The hepatologist said I probably had it for 10 years because it takes a long time to present itself.
The symptom that led to a diagnosis was confusion and irrationality, which was from HE episodes, HE is hepatic encephalopathy. Because I had these crazy episodes my doctor thought my problem was neurological so he sent me to a neurologist. The neurologist was the one who said he thought it was my liver! Prior to that I had declining platelet counts, shaky hands, and a few other symptoms, all typical of cirrhosis but no doctor added them up.
HE happens because your poorly functioning liver cannot filter out the ammonia which is a by-product of digestion. The ammonia goes to your brain and causes confusion.
JK

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@contentandwell
Did your doctor ever mention Visceral fat to you and it’s dangers before actually getting Liver disease?
Jake

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@jakedduck1

@contentandwell
Did your doctor ever mention Visceral fat to you and it’s dangers before actually getting Liver disease?
Jake

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@jakedduck1 No, Leonard, no doctor really did. I think they knew I was smart enough to realize I was overweight and probably wanted to not risk having me no longer coming to them. I think very few doctors speak to their overweight patients for that reason. I had numerous PCPs before I had cirrhosis, at least 4, and only one very cautiously mentioned weight when she diagnosed me as having diabetes. She was a really good doctor but she left the regular practice to become a hospitalist since that fit better with being a mother of young children. I still miss her.
I knew that being an "apple" put me at greater risk for heart disease but I had no idea of the other things it put me at higher risk of. Frankly, I am not sure it would have made much of a difference. Hindsight is always 20/20.
JK

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Hi, my name is Ann and I have an Aunt who has been living with peripheral neuropathy since I was a child. I am now 60 years old and my Aunt is in her late 80's. Recently my cousin (her son) was told that she had reached the maximum medicinal treatment available. He was told by someone to talk to a doctor at some clinic re: Stem Cell Therapy for peripheral neuropathy. I have been searching the Internet and all I can find is some research being done on it but no definitive treatments using Stem Cells. Does the Mayo Clinic have any information on this topic that I can pass on to my cousin. He is not in the healthcare field so he turned to me for help. Thank you very much for your assistance. I truly appreciate it. Ann

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@annmarie1

Hi, my name is Ann and I have an Aunt who has been living with peripheral neuropathy since I was a child. I am now 60 years old and my Aunt is in her late 80's. Recently my cousin (her son) was told that she had reached the maximum medicinal treatment available. He was told by someone to talk to a doctor at some clinic re: Stem Cell Therapy for peripheral neuropathy. I have been searching the Internet and all I can find is some research being done on it but no definitive treatments using Stem Cells. Does the Mayo Clinic have any information on this topic that I can pass on to my cousin. He is not in the healthcare field so he turned to me for help. Thank you very much for your assistance. I truly appreciate it. Ann

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Hi Ann @annmarie1, Welcome to Connect. I don't know of any successful stem cell treatment/therapy for any autoimmune disease but there is a good discussion for neuropathy that you might be interested in reading through to see what others have discussed. Normally it's not covered by insurance. Also I don't think there have been any clinical trials or FDA approval for any of these types of treatments so it's good to do a lot of research.

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Here are some articles that may provide some more information.

There is also a post by @colleenyoung our Director that discusses one of the focus areas on neuroregeneration, one of Mayo Clinic's Regenerative Medicine Programs.
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/?pg=1#comment-110326

‘Amazing’ New Stem Cell Treatment for Neuropathy (July 2015)
https://www.painnewsnetwork.org/stories/2015/7/12/amazing-stem-cell-treatment-for-neuropathy

National Institutes of Health – Mesenchymal stem cells to treat diabetic neuropathy: a long and strenuous way from bench to the clinic
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979500/

Do you know if your aunt has a specific diagnosis for her neuropathy and what type of symptoms she has?

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@helennicola

Hi Chris, you probably mentioned your “reputable” source in a past post but could you please tell us again which online source you use? I am going to Ca. in November and plan to purchase some to bring home. Thanks, Helen

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Hi there @helennicola, I am just checking in with you, #1 to see how you are feeling, #2 to see if you are still headed for CA and 3# to take me with you….naw…..just teasing. If you will tell me the city where you will be, I will see if you can get my favorites there or a quality substitute. Are you traveling by air or is this a road trip? May you have relief from pain. Chris

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@artscaping

Hi there @helennicola, I am just checking in with you, #1 to see how you are feeling, #2 to see if you are still headed for CA and 3# to take me with you….naw…..just teasing. If you will tell me the city where you will be, I will see if you can get my favorites there or a quality substitute. Are you traveling by air or is this a road trip? May you have relief from pain. Chris

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Hi Chris, I am feeling much better lately, thank you for asking; my husband’s back surgery went well and he is now walking without a cane. We are going to LA in November, Mt. Washington area, not far from downtown. We are flying (😞). Hope you are well and enjoying the beautiful cooler weather. Helen

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I’ve been living with neuropathy for decades and it’s been getting worse. It can feel maddening and is wearing on me a lot lately. I can’t even keep track of or try to count the many places it hits me in a second or several seconds then it hits me in some other completely different area, almost nonstop all day every day. Occasional bouts where it’s far worse but those are a different thing where it’s an all-over feeling of pressure that’s pain, usually lasting 2-4 days. I never got a clear answer as to why and studies of the spine don’t show why. Sugar has been borderline for years but not diabetic. Glad to find a discussion group.

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I had a apt with the neurosurgeon and he said I really need surgery on spine.it will never get better without it, only worse. It’s lower lumbar L4. L5. And spinal stenosis. Has anyone had this type of surgery and it helped the neuropathy??

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@lisie

I’ve been living with neuropathy for decades and it’s been getting worse. It can feel maddening and is wearing on me a lot lately. I can’t even keep track of or try to count the many places it hits me in a second or several seconds then it hits me in some other completely different area, almost nonstop all day every day. Occasional bouts where it’s far worse but those are a different thing where it’s an all-over feeling of pressure that’s pain, usually lasting 2-4 days. I never got a clear answer as to why and studies of the spine don’t show why. Sugar has been borderline for years but not diabetic. Glad to find a discussion group.

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Hi @lisie, Welcome to Connect. I've have idiopathic small fiber peripheral neuropathy for 20+ years but I only have numbness and no real pain in both feet and slightly above the anklles. I shared my story earlier in a post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

It can wear you down if let it get to you. The one thing that helps me when I'm having a bad day is to try and focus on something else as hard as that might sound. Sometimes it's just looking around or outside through the window at the bird feeder and enjoying whatever is there. It sounds like your neuropathy is also idiopathic. Are you able to share a little more about your neuropathy diagnosis and what medications you are taking if any?

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@lisie

I’ve been living with neuropathy for decades and it’s been getting worse. It can feel maddening and is wearing on me a lot lately. I can’t even keep track of or try to count the many places it hits me in a second or several seconds then it hits me in some other completely different area, almost nonstop all day every day. Occasional bouts where it’s far worse but those are a different thing where it’s an all-over feeling of pressure that’s pain, usually lasting 2-4 days. I never got a clear answer as to why and studies of the spine don’t show why. Sugar has been borderline for years but not diabetic. Glad to find a discussion group.

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Good evening @lisie, I want to welcome you to Connect. The Neuropathy group is quite good sized and active. I thought it was heavenly to find folks who talked about symptoms and solutions in a friendly, informative forum. So, that being said, I have not quite wrapped my brain around your description of what you call neuropathy bouts. Do you mean that your neuropathy hits you with pain in different places on your body and for different periods of time? Is the type of pain always the same? Please help me understand. Thank you and have a peaceful sleep. Chris

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@peggyn

I had a apt with the neurosurgeon and he said I really need surgery on spine.it will never get better without it, only worse. It’s lower lumbar L4. L5. And spinal stenosis. Has anyone had this type of surgery and it helped the neuropathy??

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@peggyn, Good evening. It appears that you are not really happy with the prospect of surgery unless it helps with the neuropathy. Or did I misunderstand? I have had 2 surgeries in that area, a laminectomy and then a fusion. That was long before my neuropathy started. What did happen is that I no longer have any back pain.

The surgeon at the time told me I would need more surgery in another 10 years. Well….because of meeting a lady named Kate who became my fitness teacher, I do two exercises every day to maintain the lumbar spine. Other than some stiffness after sitting a while, my back is perfect and I will do whatever it takes to keep it that way.

I certainly wish for you relief from pain and suffering. Now, just have a peaceful sleep. Chriss

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@peggyn

I had a apt with the neurosurgeon and he said I really need surgery on spine.it will never get better without it, only worse. It’s lower lumbar L4. L5. And spinal stenosis. Has anyone had this type of surgery and it helped the neuropathy??

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Didn’t help my neuropathy

Liked by Leonard

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@peggyn

I had a apt with the neurosurgeon and he said I really need surgery on spine.it will never get better without it, only worse. It’s lower lumbar L4. L5. And spinal stenosis. Has anyone had this type of surgery and it helped the neuropathy??

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@peggyn Spinal stenosis in the central canal causes myelopathy or damage to the spinal cord. I think neuropathy refers to problems of the nerves outside of the spinal cord which spine surgery would not address unless it was compression of the nerve roots where they exit the spine in between the vertebrae. Spinal cord compression can cause pain in the limbs or body that can be confused with neuropathy because they have overlapping symptoms. That was true in my case. I had spinal cord compression in my neck that caused pain all over my body. I had spine surgery at Mayo, and it fixed all that pain because it was being generated by compression of my spinal cord. I also have some nerve compression issues in my neck and shoulder from Thoracic Outlet Syndrome that I work on in physical therapy. Spine surgery didn't directly address that. The spasms caused by the spine problem had been triggering the TOS, but since surgery, the neck spasms have calmed down because it's all connected. Surgeons tell you that decompression will stop something from getting worse. Your ability to recover after this depends on how long the nerves have been compressed, how bad it is as in permanent damage, and your health and ability to heal. It's better to fix something before permanent damage occurs, and sometimes, it hard to say specifically when that would be. I know surgery is a big step, and I would encourage you to get several opinions. Other surgeons may suggest different procedures as there may be different solutions to the problem. I have heard that lumbar spine surgery recovery is harder because the lumbar spine is bearing all your body weight, and just leaning over will put a lot of stress on the spine. Find the best surgeons you can at large medical centers that have teaching hospitals and medical schools. If you can come to Mayo, I highly recommend it. I had excellent results for cervical spine surgery and Mayo treats a lot more of these types of cases and complex cases than many places. That's why I suggest a large teaching medical center because they have more experience.

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