Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

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

Profile picture for sdiane @sdiane

Hi, @johnbishop. Your story is very interesting. I started with similar symptoms as yours in January 2025. I am 59 years old. Bloodwork is fine and Vascular Surgeon said it isn't vascular. I already see an Endocrinologist for thyroid which is also fine.
It seems like this disorder is typically not treatable as far as I can tell from all the posts.
Is it even worth going down the rabbit hole of seeing a neurologist or rheumatologist? What's the point if there isn't much that can be done? I live in Florida so I could go to Mayo but it is 5 hours away. Just wondering if the diagnosis really matters if there's nothing they can do to treat it.
Thank you!

Jump to this post

Welcome @sdiane, I felt the same way for a long time, sort of "what's the use" but since joining Connect back in 2016 and learning what other members have shared, I feel it's better to seek a diagnosis even if you may end up with no new treatment options. Maybe it's just the comfort of knowing and certainty. I had always leaned a little towards something related to diabetes causing my neuropathy even though I've never been diagnosed with diabetes. I struggled with weight most of my adult life and only within the past 6 years got it under control. That's when I learned about the metabolic syndrome which was never mentioned by any of my primary care doctors who kept telling me I was pre-diabetic.

I shared my weight loss journey in the Low-carb health fat living. Intermittent fasting. What's your why? discussion here - https://connect.mayoclinic.org/comment/336050/. If you want to learn a little more about the metabolic syndrome and it's connection with neuropathy, here are some references I've found helpful:
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
What's the symptom that bothers you the most? Have you found anything that provides some relief?

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @sdiane, I felt the same way for a long time, sort of "what's the use" but since joining Connect back in 2016 and learning what other members have shared, I feel it's better to seek a diagnosis even if you may end up with no new treatment options. Maybe it's just the comfort of knowing and certainty. I had always leaned a little towards something related to diabetes causing my neuropathy even though I've never been diagnosed with diabetes. I struggled with weight most of my adult life and only within the past 6 years got it under control. That's when I learned about the metabolic syndrome which was never mentioned by any of my primary care doctors who kept telling me I was pre-diabetic.

I shared my weight loss journey in the Low-carb health fat living. Intermittent fasting. What's your why? discussion here - https://connect.mayoclinic.org/comment/336050/. If you want to learn a little more about the metabolic syndrome and it's connection with neuropathy, here are some references I've found helpful:
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
What's the symptom that bothers you the most? Have you found anything that provides some relief?

Jump to this post

Hi, John, thanks for your reply! This is great to have a supportive community.

I wonder about the metabolic piece as you mention, because my dad and sister both became diabetic around my age. I did feel better when I was on Paleo (for two years) but now I try to just eat healthy and low sugar/low carb. I could improve that though. What was bothering me the most when symptoms started I had horrible painful leg cramps, mostly at night. It's awful to wake up suddenly in intense pain. Then I started taking Magnesium which stopped the cramps but I feel like they are "trying" to come on. I am so worried they will come back. Now I am left with pins and needles as well as cold rushes on and off. Honestly what bothers me the most is I feel like there is a reason, an answer as to why this is happening but medical professionals kind of "blow me off." The Vascular Surgeon said it wasn't related to PAD, my Endo said "just take Vitamin B and you will be fine" and the primary said "your blood work is perfect." I also have fatigue and some muscle weakness. I just don't feel good, basically.
I also have Renaud's and Neurogenic Cardio Syncope. No idea where all of this comes from. No one in my family has any of these conditions or a Thyroid problem (Nodule). Seems like my system is fighting itself.
I looked into the Protocol you mentioned and I get a little wary of taking such high doses of supplements as I don't want to make things worse. There has to be a way to feel better. I also have mysteriously gained 6 pounds in 6 weeks. I know that doesn't sound like a lot but it's never happened before. Something seems wrong but the medical community doesn't seem to take me seriously.

REPLY
Profile picture for sdiane @sdiane

Hi, @johnbishop. Your story is very interesting. I started with similar symptoms as yours in January 2025. I am 59 years old. Bloodwork is fine and Vascular Surgeon said it isn't vascular. I already see an Endocrinologist for thyroid which is also fine.
It seems like this disorder is typically not treatable as far as I can tell from all the posts.
Is it even worth going down the rabbit hole of seeing a neurologist or rheumatologist? What's the point if there isn't much that can be done? I live in Florida so I could go to Mayo but it is 5 hours away. Just wondering if the diagnosis really matters if there's nothing they can do to treat it.
Thank you!

Jump to this post

Hi, sdiane (@sdiane)

I was diagnosed (via EMG) as having chronic idiopathic axonal (large-fiber) polyneuropathy. That's a mouthful, I know. 🙂 For about 10 years before my diagnosis, I was having balance "issues." Eventually, I started various balance workshops, online and in-person.

The difference for me in how I related to my wobbly balance prior to my PN diagnosis and since my diagnosis is that prior to my diagnosis my attitude was, "Dammit, how many more of these %^$#& workshops do I have to take before my balance is '100% perfect' once again?" and my attitude post-diagnosis (now that I know nothing will cure me) has been, "At least my balance hasn't worsened––in fact, it may even be slightly better––thanks to all of these workshops I've been taking."

So in this one way, for me, knowing what I've got has made a difference: in my attitude, not a cure, simply providing me with a relaxed understanding of the value persistent balance work.

I wish you the very best!
Ray (@ray666)

REPLY

Thanks for your comment @ray666. That makes sense. I have heard that to get a diagnosis they have to perform nerve testing which is really painful. Is that mandatory, or can they find out what type of Neuropathy it is with other methods? I do have a low pain tolerance unfortunately.
Thanks again. 🙂

REPLY

Balance is my worst issue. My PN is pain free. All I feel is numbness and a slight tingling in my feet. My legs are weak and the left leg is the weakest. The 30mg of Lipitor for cholesterol caused my Type 2 diabetes and that caused my PN. I do leg and calf presses at the gym to keep my legs strong. I’m dealing with PN and I refuse to let it keep me down.

REPLY
Profile picture for sdiane @sdiane

Thanks for your comment @ray666. That makes sense. I have heard that to get a diagnosis they have to perform nerve testing which is really painful. Is that mandatory, or can they find out what type of Neuropathy it is with other methods? I do have a low pain tolerance unfortunately.
Thanks again. 🙂

Jump to this post

Hi, Diane

I've had nerve testing done three times in my life and I never found it to be especially painful, but of course we each have different tolerance levels when it comes to pain. I'm hardly a macho guy; I'm the kind of guy who has to look away when my blood is drawn. 🙂 Unforunately, I know of no other way of obtaining a proof-positive diagnosis without having to submit to nerve testing. There may be other ways; it's just that I don't know of any.

My very best to you!
Ray (@ray666)

REPLY
Profile picture for Ray Kemble @ray666

Hi, sdiane (@sdiane)

I was diagnosed (via EMG) as having chronic idiopathic axonal (large-fiber) polyneuropathy. That's a mouthful, I know. 🙂 For about 10 years before my diagnosis, I was having balance "issues." Eventually, I started various balance workshops, online and in-person.

The difference for me in how I related to my wobbly balance prior to my PN diagnosis and since my diagnosis is that prior to my diagnosis my attitude was, "Dammit, how many more of these %^$#& workshops do I have to take before my balance is '100% perfect' once again?" and my attitude post-diagnosis (now that I know nothing will cure me) has been, "At least my balance hasn't worsened––in fact, it may even be slightly better––thanks to all of these workshops I've been taking."

So in this one way, for me, knowing what I've got has made a difference: in my attitude, not a cure, simply providing me with a relaxed understanding of the value persistent balance work.

I wish you the very best!
Ray (@ray666)

Jump to this post

I also have bad balance due to PN. Can you share more info about the classes that you took. Where? Etc. Thanks in advance. Susan

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @sdiane, I felt the same way for a long time, sort of "what's the use" but since joining Connect back in 2016 and learning what other members have shared, I feel it's better to seek a diagnosis even if you may end up with no new treatment options. Maybe it's just the comfort of knowing and certainty. I had always leaned a little towards something related to diabetes causing my neuropathy even though I've never been diagnosed with diabetes. I struggled with weight most of my adult life and only within the past 6 years got it under control. That's when I learned about the metabolic syndrome which was never mentioned by any of my primary care doctors who kept telling me I was pre-diabetic.

I shared my weight loss journey in the Low-carb health fat living. Intermittent fasting. What's your why? discussion here - https://connect.mayoclinic.org/comment/336050/. If you want to learn a little more about the metabolic syndrome and it's connection with neuropathy, here are some references I've found helpful:
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
What's the symptom that bothers you the most? Have you found anything that provides some relief?

Jump to this post

Hi John, I was just scrolling and came across this old post . My GP keeps hinting that I am borderline Type 2 and like you I have always suspected he is probably right. I am not taking anything for my PN but am tempted to try R- Lipoic acid. Is it generally accepted that RALA is a good idea to try

REPLY
Profile picture for bigjohnscho @bigjohnscho

Hi John, I was just scrolling and came across this old post . My GP keeps hinting that I am borderline Type 2 and like you I have always suspected he is probably right. I am not taking anything for my PN but am tempted to try R- Lipoic acid. Is it generally accepted that RALA is a good idea to try

Jump to this post

Hi John @bigjohnscho - I've been taking it since 2016 along with other recommended supplements but I don't have any pain with my neuropathy so can't say that it helps for everyone. I take it in hopes that it is slowing the progression or possibly has stopped the progression. I know starting out it causes nausea for some folks. A work around was to start with a lower dose capsules (100 mg) along with some food or a bite of a banana to help with the nausea until the body got used to it then keep adding to the dose until you reach the recommended dose - for me that is 600 mg morning and evening.

I think what really helped me more than any supplements I'm taking was a lifestyle change I made about 6 years ago after starting the supplements. I shared my weight loss journey in the Low-carb healthy fat living. Intermittent fasting. What’s your why? discussion here - https://connect.mayoclinic.org/comment/336050/.
Did your GP give you any suggestions on any changes you can make in your diet or lifestyle that will help improve your health and possibly get you out of the type 2 diabetes borderline category?

REPLY
Profile picture for scain @scain

I also have bad balance due to PN. Can you share more info about the classes that you took. Where? Etc. Thanks in advance. Susan

Jump to this post

Good morning, Susan

I may have made my "classes" sound too formal. I began with a balance workshop at the local YMCA. That workshop, unfortunately, came to an end when COVID came along. Homebound, I tried a few online balance programs, settling on one and sticking with it for more than a year. (That program is no longer online.) Once the COVID restrictions were lifted, my PCP referred me to a nearby PT clinic. I stuck with them until I felt I'd exhausted all the benefit I might get. It was shortly after that I developed a sepsis infection (a year and a half ago), which––if the infection has proven to be of any "use" to me––has resulted in covered at-home PT. I'm still doing at-home PT (plus loys of impromptu balance work in my "free time"). As you might see, my "classes" have been a patchwork from the very beginning.

Cheers!
Ray (@ray666)

REPLY
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