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.

katherinac | @katherinac | May 3 6:08pm

In reply to @mpaf "Hi, I don't know if I have PN, per se, so that is part of the..." + (show)

With peripheral neuropathy you get numbness in your feet, legs and fingers along with possibly pain and burning.
I had had it for many years. I take capsules from Juice Plus that have many servings of berries. I also take Dynamic Nerve from Stonehenge. Those lesson the problems. My brother doesn't take these and his feet and legs are numb. Best wishes to you.

katherinac | @katherinac | May 3 6:17pm

In reply to @gus0557 "Hi Angela, First, sorry for all you're going through and hope you'll get more answers. From..." + (show)

When is the Juice Plus Berries please note that the healing takes place on the cellular level so it takes about 6 weeks to notice s difference. To have the continue improvement you need to continue the product
They are organizing and they are purchasing through na distributor. Jayne Benkendorf is
very up on the advantages of this product.

janeenelizabeth | @janeenelizabeth | 4 days ago

Hi John,
Thanks for sharing this discussion with me. Im new to connect. I will turn 50 this summer. I was diagnosed with sfn two years ago but realizing that I have had symptoms for years actually since I was a child with something strange that they thought might be autoimmune. But they never could or recently have not been able to find. I have always had allergies and intolerances to foods and medicine. In the last 8 years things progressed worse with autonomic failure with skin thinning, dry eyes, lack of sweating, low blood pressure, low glucose, low body temperature, and with tripping/ falling. Its not constant but more like flares. I do not have constant pain. I will get some quick sharp pains with cramping and muscle twitching at times but have always had a very high pain tolerance. Im greatful to be connecting with others that have found information about this.

janeenelizabeth | @janeenelizabeth | 4 days ago

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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I forgot to ask in my previous comment. Does diet seem to play into this disease? Are there things that I should stay away from or include in my diet?

MamaMarch | @mamamarch | 4 days ago

In reply to @janeenelizabeth "I forgot to ask in my previous comment. Does diet seem to play into this disease?..." + (show)

Inflamatory foods should be avoided with sugars being top on the list! That includes alcohol.

John, Volunteer Mentor | @johnbishop | 3 days ago

In reply to @janeenelizabeth "I forgot to ask in my previous comment. Does diet seem to play into this disease?..." + (show)

I think @mamamarch hit the nail on the head with limiting or avoiding sugar and inflammatory foods, including alcohol. The Foundation for Peripheral Neuropathy has a great list of lifestyle and dietary information here - https://www.foundationforpn.org/lifestyles/peripheral-neuropathy-nutrition/.

A discussion on a topic that really helped me change my lifestyle and get to a healthier weight might be something to look into:
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/