1. < Neuropathy
Mentor

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.

helennicola | @helennicola | Jan 29, 2021
In reply to @sunnyflower "Hello Helen. Good to hear from you. I hope this finds you well. I experience numbness..." + (show)
@sunnyflower

Hello Helen. Good to hear from you. I hope this finds you well.

I experience numbness from both my neuropathy and Gabapentin. Before Gabapentin I only had intense stinging/burning/pins and needles and it felt like I was missing the top layer of my skin. After taking Gabapentin I am now am so numb that I can't feel wetness on my body, even when in a swim pool. I can feel temperature and some pressure but not always. My experience is valid. Here is a website to confirm Gabapentin can cause numbness: https://www.ehealthme.com/is/gabapentin/numbness-and-tingling/.

Regarding Alpha Lipoic Acid types, I'm afraid you have misread or misunderstood what I wrote. I never said that R ALA is superior to S ALA or S&R ALA. I said that my Endocrinologist said the R&S ALA is the best. She told me the R ALA was only tested on rats.

I'm sure your intentions are good but basically you challenge me to prove my statement that Gabapentin can cause numbness and that what I said about R ALA is a fallacy.

I take what I write as a very serious responsibility to be accurate and never want to lead anyone astray. I welcome any corrections to what I say b/c I could be wrong at any time but perhaps they could come more gently and less assuming and judgmental.

Warmest wishes, stay well, Sunnyflower

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Sunny, what I am understanding from the URL is that people who take gabapentin may be suffering from numbness, burning and tingling, (that is why they take the drug) not that those are side effects. From what I understand, numbness may follow those above symptoms in many cases. I was interested in why your dr. felt that the combo of the 2 Ala’s were better, as I had always read that RAla was superior, that is why I switched! I don’t mean to challenge you, like I said it is not always possible to have “proof” of any statements. sorry if I misunderstood. Helen

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helennicola | @helennicola | Jan 29, 2021
In reply to @bustrbrwn22 "@helennicola Helen. I thought this Forum was to share our own PERSONAL experiences, not look up..." + (show)
@bustrbrwn22

@helennicola Helen. I thought this Forum was to share our own PERSONAL experiences, not look up AMA or JAMA citations and note bibliographies? What works or happens to one person might not for the next and it’s up to us as responsible consumers to do our research and make decisions for ourselves.
Could a moderator please correct me if I am wrong?
Thanks so much for sharing your viewpoint. It might bring clarity to the purpose of the Forum if it is needed.

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Hi Bustrbrwn, sorry if I came across as being judgmental or critical; I had never heard or read previously that numbness was a possible side effect of gabapentin so I guess I thought it was just one more thing to worry about. The reference to the Ala is noteworthy and I was curious as to why Sunny’s dr. arrived at that opinion since I had changed to the aRAla and it is more costly. 🤗 Helen

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sunnyflower | @sunnyflower | Jan 29, 2021
In reply to @sunnyflower "Hello Helen. Good to hear from you. I hope this finds you well. I experience numbness..." + (show)
@sunnyflower

Hello Helen. Good to hear from you. I hope this finds you well.

I experience numbness from both my neuropathy and Gabapentin. Before Gabapentin I only had intense stinging/burning/pins and needles and it felt like I was missing the top layer of my skin. After taking Gabapentin I am now am so numb that I can't feel wetness on my body, even when in a swim pool. I can feel temperature and some pressure but not always. My experience is valid. Here is a website to confirm Gabapentin can cause numbness: https://www.ehealthme.com/is/gabapentin/numbness-and-tingling/.

Regarding Alpha Lipoic Acid types, I'm afraid you have misread or misunderstood what I wrote. I never said that R ALA is superior to S ALA or S&R ALA. I said that my Endocrinologist said the R&S ALA is the best. She told me the R ALA was only tested on rats.

I'm sure your intentions are good but basically you challenge me to prove my statement that Gabapentin can cause numbness and that what I said about R ALA is a fallacy.

I take what I write as a very serious responsibility to be accurate and never want to lead anyone astray. I welcome any corrections to what I say b/c I could be wrong at any time but perhaps they could come more gently and less assuming and judgmental.

Warmest wishes, stay well, Sunnyflower

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Hello Helen and @bustrbrwn22, I re-read the article I included in my response to you @helennicola, above, for the 3rd time. The entire context is about some side effects of Gabapentin and drugs like it and it does say that numbness can be a side effect. It is a little confusing. It appears that not a lot of people experience this. See the numbers in their study. I made a mistake when I said ny Rheumatologist told me what the best ALAis. It was my Neurologist. Sorry about that. Hope you have a good weekend. Much better than tolerable and many blessings. Warmest wishes, Sunnyflower 😊

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fiesty76 | @fiesty76 | Jan 30, 2021
In reply to @ea1 "Thanks Sunnyflower for the welcome! I am only on my third year since feeling the first..." + (show)
@ea1

Thanks Sunnyflower for the welcome! I am only on my third year since feeling the first symptoms and have experienced progression in numbness and cold feet but no pain so far. I feel fortune for not have pain as many of you go through on a daily basis...

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Like you, ea1, I am on my third yr of p.n. diagnosis and although the numbness is creeping up the legs and I'm experiencing more in my hands, I also am so thankful that I just contend with coldness and numbness but no pain like so many do.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 30, 2021
In reply to @bustrbrwn22 "@helennicola Helen. I thought this Forum was to share our own PERSONAL experiences, not look up..." + (show)
@bustrbrwn22

@helennicola Helen. I thought this Forum was to share our own PERSONAL experiences, not look up AMA or JAMA citations and note bibliographies? What works or happens to one person might not for the next and it’s up to us as responsible consumers to do our research and make decisions for ourselves.
Could a moderator please correct me if I am wrong?
Thanks so much for sharing your viewpoint. It might bring clarity to the purpose of the Forum if it is needed.

Jump to this post

Hi all,
Yes, Mayo Clinic Connect is an online community where you can share your experiences and find support from others who may have similar health issues. It's a place where people can improve their health and wellbeing, and share their progress and setbacks and be supported by fellow members.

It is helpful when sharing information or medical claims that members state the source of the information and medical evidence, and where possible provide a link.

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mush198056 | @mush198056 | Jan 31, 2021

I am not sure where I belong but that’s nothing new, lol. I recently learned I have had a TBI from aneurysm starting in the late 1990. I’m a day late and lots of pennies short, lol. Any suggestions are greatly appreciated but I tried may different rabbit holes but it was hard because I could not communicate clearly my deficits for lack of official diagnosis. I also live in a community that is outside of medical initiative. I was fired while on medical leave. I was participating in HepC medical trial which got the best of me. Well that’s enough for now I’m looking forward to moving on. Ty

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 31, 2021
In reply to @mush198056 "I am not sure where I belong but that’s nothing new, lol. I recently learned I..." + (show)
@mush198056

I am not sure where I belong but that’s nothing new, lol. I recently learned I have had a TBI from aneurysm starting in the late 1990. I’m a day late and lots of pennies short, lol. Any suggestions are greatly appreciated but I tried may different rabbit holes but it was hard because I could not communicate clearly my deficits for lack of official diagnosis. I also live in a community that is outside of medical initiative. I was fired while on medical leave. I was participating in HepC medical trial which got the best of me. Well that’s enough for now I’m looking forward to moving on. Ty

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Hello @mush198056, Welcome to Connect. Connect is a great place to learn from others with similar symptoms. As patients I know it can be difficult at times to communicate with doctors and medical staff which is one of the strengths of Connect. The more you learn about your condition, hopefully the better you get at asking the right questions of your doctors and care team. There is another discussion that you might find helpful since you mentioned you recently learned you have had a traumatic brain injury (TBI) from an aneurysm.

TBI and brain aneurysms: https://connect.mayoclinic.org/discussion/tbi/

You mentioned you were participating in a Hepatitis C clinical trial but it got the best of you. Are you able to share a little more about the trial and have you been diagnosed with Hepatitis C?

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Hank | @jesfactsmon | Jan 31, 2021
In reply to @mush198056 "I am not sure where I belong but that’s nothing new, lol. I recently learned I..." + (show)
@mush198056

I am not sure where I belong but that’s nothing new, lol. I recently learned I have had a TBI from aneurysm starting in the late 1990. I’m a day late and lots of pennies short, lol. Any suggestions are greatly appreciated but I tried may different rabbit holes but it was hard because I could not communicate clearly my deficits for lack of official diagnosis. I also live in a community that is outside of medical initiative. I was fired while on medical leave. I was participating in HepC medical trial which got the best of me. Well that’s enough for now I’m looking forward to moving on. Ty

Jump to this post

@mush198056
Hi Ty, welcome to Connect. Boy you packed a lot into one short post. You only recently got a diagnosis of a TBI that occurred in 1990? What all have you been going thru all these years? I'm betting it's not been a fun ride. Please elaborate for us all that you have gone through. There are many people here who will try to offer helpful suggestions, we'd just need a little more info. My sympathies go out to you and wishing you all the best. Hank

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bustrbrwn22 | @bustrbrwn22 | Feb 16, 2021

Hi Sunny. I just read they increased your morphine. What a wonderful thing for such an awesome gal!! Sorry I’m so behind on emails.

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artist01 | @artist01 | Feb 19, 2021
In reply to @johnbishop "I started my journey with neuropathy when I was in my early 50s, with some numbness..." + (show)
@johnbishop

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

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@johnbishop John, you are a Research MACHINE! lol. Wonderful post, with great insight and suggestions, as well as all the site referrals.
I developed neuropathy issues after my diagnosis of GCA, and the resultant 1000 ml Prednisone injections for 3 days while hospitalized. I also had a stroke on that 2nd day. I've always blamed the neuropathy on Prednisone.
It started rather unnoticed but soon progressed to full legs, left and right, and the numbness was extreme. Now it's below the knee, both legs, and still quite extreme. My doctors have indicated not much can be done for it, so I haven't pursued an appointment with my neurologist or tried any of the prescription meds or creams, etc.
Recently I became aware of it getting much worse in the evenings and through the night. From that point, I analyzed that it might be worsened by diet choices. And eureka! After a period of trial and error, it became obvious it was carbs, in my case, that made it worse. Potatoes, a favorite of mine, were the worst culprit, but also bread, pasta, rice. This week, I've made the decision to cut carbs from my diet. I'm Diabetic though, so am cautioned to watch my numbers and still have SOME carbs. We'll see how this works out. Best to you, John.
Laurie PS, I'm off Prednisone since November because my WBC and neutrophils crashed, but still on Actemra injections for the GCA.

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