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.

@highdesertdweller

I've recently been hearing a lot about DMSO and it seems to have verified clinical results. Does anyone have experience with this medication? Thank you.

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@retired123, @snagydude, @hjeff and others have mentioned DMSO and may have experience to share with you. There are also a few discussions that mention DMSO - https://connect.mayoclinic.org/search/discussions/?search=DMSO.

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@lgort5

I have suffered from PN for 2 years. I'm 77 years old and I have been on 20mg of pravastatin at bedtime for about 15 years. Could this be the cause if my NP? And what other chlorestrol medications are available that won't aggrevate my NP that I can discuss with my PCP? Thanks

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You might want to scan through the discussions on alternatives to statins - https://connect.mayoclinic.org/search/?search=alternatives+to+statin.

Not sure anyone can determine if the statin is what has caused your neuropathy but it's a discussion worth having with your doctor. Have you talked to your doctor about alternative ways to lower your cholesterol?

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Breast cancer survivor of one year. Lymph nodes removed in armpit.Neuropathy in feet. Recently diagnosed as insulin resistant.

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@andyjustin

Well, I’ve said my story all over the place. With a lot of different groups here in these chat rooms 2 1/2 years ago I didn’t know what neuropathy was, now I must say sadly I am well-versed in all of its complications. I learned about medicines. I’ve never heard of therapies than some cases. and in most cases, don’t do a damn thing. Hopefully, I have help open up discussions on the psychological effects of neuropathy, which I truly believe have an impact a very large impact on the physical aspects of this disease. We are all on a path, though different in many ways, the same, and it is my hope that someday there will be more answers than questions. I think I’m gonna take a break for a while cause real realistically not many of these post lift my spirits all the best I’ll be back.

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I agree with you. These posts should be less about the desperation of trying to get a diagnosis (what difference does it make what kind of neuropathy you have?) and more about how to cope with it? Personally, I have been announcing to my family that I do not have the psychological wherewithal to withstand this condition if it keeps progressing at its current rate. Nor do I want to be a burden or end up in a nursing home. From the looks on their faces, they either don't know what I'm saying or don't want to know what I'm saying.

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@bucksgal52

I agree with you. These posts should be less about the desperation of trying to get a diagnosis (what difference does it make what kind of neuropathy you have?) and more about how to cope with it? Personally, I have been announcing to my family that I do not have the psychological wherewithal to withstand this condition if it keeps progressing at its current rate. Nor do I want to be a burden or end up in a nursing home. From the looks on their faces, they either don't know what I'm saying or don't want to know what I'm saying.

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I agree with you. What symptoms do you have?

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@lmt042404

I agree with you. What symptoms do you have?

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I have PD also. Interested in seeing what symptoms you have.

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@bucksgal52

I agree with you. These posts should be less about the desperation of trying to get a diagnosis (what difference does it make what kind of neuropathy you have?) and more about how to cope with it? Personally, I have been announcing to my family that I do not have the psychological wherewithal to withstand this condition if it keeps progressing at its current rate. Nor do I want to be a burden or end up in a nursing home. From the looks on their faces, they either don't know what I'm saying or don't want to know what I'm saying.

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@bucksgal52
The Comments usually are from and about someone who is hurting.
We are free to express our frustration. When you have a life changing diagnosis with no cure, it can really spin you around.
I know exactly how that goes. In addition to having Polyneuropathy I was also diagnosed with Mild Cognitive Impairment MCI. I currently also have traits of Frontotemporal Dementia. No cure for that either. At 75, I am doing the best I can each day.

Have a beautiful day.

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It is definitely helpful to hear from others with PN. Mine feels like pins and needles/tingling primarily in my arms and legs. I do have cervical spine stenosis but at 83 am reluctant to have surgery. And I’m not certain this is the cause anyway. I have tried lyrica and cymbalta… too many side effects! Not sure what step to take. Low dose mirtazapine? Any help or advice would be appreciated!

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@bobbiefosh

It is definitely helpful to hear from others with PN. Mine feels like pins and needles/tingling primarily in my arms and legs. I do have cervical spine stenosis but at 83 am reluctant to have surgery. And I’m not certain this is the cause anyway. I have tried lyrica and cymbalta… too many side effects! Not sure what step to take. Low dose mirtazapine? Any help or advice would be appreciated!

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Hello @bobbiefosh, Welcome to Connect. I don't blame you for being reluctant to have surgery. I'm 82 and feel about the same. I only have numbness and some tingling with my neuropathy so all medications are out since they only provide relief for the pain that goes along with neuropathy and even then don't help a lot of folks with neuropathy pain symptoms. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

If you haven't seen the Foundation for Peripheral Neuropathy site, it has a list of treatments including complementary and alternative therapies that you might find helpful: https://www.foundationforpn.org/therapies/.

Since you mentioned you have cervical spine stenosis which could be causing some of your symptoms I thought I would mention another discussion that might be of interest.
-- 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 tried any complementary or alternative treatments to see if any might help?

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@lmt042404

I agree with you. What symptoms do you have?

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My symptoms started about 8 years ago with buttocks numbness and leg stiffness. When I walked it felt like I could not flex my legs or feet. In the ensuing years, I have hot feet and cold feet, and feet that feel that they are hot and cold but are not. (Copious amounts of B12 and wonderful microwaveable booties mitigate some of this.) Can't regulate my body temperature, especially at night when I'm trying to figure out what kind of cover to use. My overhead fan irritates the heck out of me these days. Muscle cramps, foot drop, pain at the end of my toes like wearing too small shoes, shooting pains in feet and hands, and my lower legs now feel like they are wrapped in cellophane. I even have the mysterious little wiggle that feels like a bug trapped beneath my skin. I am beginning to have more trouble walking. And more recently, I sometimes cannot lift my legs upon waking. Elsewhere on my body, I have indiscriminate numbness and tingling, especially on my face and everywhere my skin feels stretched. I mean, should you be aware of your body parts all the live long day? (Otherwise, I'm doing fine.) I have been on gabapentin for years, but my dosage is limited because too much causes fluid in lungs. I am also taking a muscle relaxer. Mostly, I rely on MJ because it is legal in my state and makes me just not care. Recently, I gave up sugar again because I'm a sugar addict, and inflammation has gone way down in just 4 days. However, none of this is a cure. My attempts for medical care led to me to a neurosurgeon who focused on my neck instead of my lower back and/or legs. After surgery (just 3 months post-op), I will have no further elective procedures. My neurosurgeon finally spoke the peripheral neuropathy words at my last visit, and I already knew I had peroneal neuropathy. But not a word about where to go from here, because sadly, there doesn't seem to be many places to go. So, my point is: we need more posts about coping and getting along instead of, in my opinion, the pointless pursuit of a diagnosis from which there is no cure.

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