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John, Volunteer Mentor (@johnbishop)

Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 10 hours ago | Replies (372)

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@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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Replies to "I started my journey with neuropathy when I was in my early 50s, with some numbness..."

Good morning
I have had two brain surgeries, diagnosed and an ankle replacement. I have tried gabapentin, nortriptyline, Lexapro, hydrocodone and Cymbalta. I am currently on hydrocodone it helps. I had a lot of side affects from the medications and decided to come off all the drugs and try to figure out ways to live with the pain. When I was on the medications I could not tell what was due to the small fiber neuropathy or the side affects of the medications. Now I am at a cross roads do I continue trying to live with the pain which is robbing me of opportunities and retirement. With the small fiber neuropathy my body causes me pain anytime I do anything standing, sitting, walking and laying in bed. The only thing I have left is my ability to think clearly with the antidepressants and anti seizure medications I was no longer able to think clearly.
Has anyone else found themselves at this cross road I would like to hear both successes and and set backs.
Thanks

@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.

John Bishop we are all blessed by you! Thank you so much for all the time and effort you contribute to us your connect family. You are a wealth of resource and we all appreciate you very, very much! Thank you for sharing your life with us. May God richly bless you, Sunny flower 😊🙏

Hi John, Thank you for sharing your story. I am going through my journey of learning about small fiber neuropathy I am 54 and up until November 2020 I lived a highly physically active life that has changed dramatic by the neuropathy. It started in my buttocks and back as a burning pain with muscle spasms saw spine specialist had MRI of Cervical and Lumbar – reveaedl age related bulging disc but noting pinching. He conducted EMG and nerve studies to reveal that my large fiber nerves and muscles were fine and it appears to be small fiber. The burning pain since November as spread to almost every part of my body. Some days are better than others. I take Gabapentin 300 mg 3x a day increased to 600mg but had to pull back to 300 – the side effects were awful. Sleep is an issue. He prescribed nortriptyline 25mg to take at night. I'm apprehensive about taking it and have not started it. Not a fan of medications. I am curious of the supplements you are taking that has helped to bring your numbness back to below your knees. I would consult with neurologist to see if those could be an option for me. Thank you for your time. Kelsey

I was diagnosed with mild Idiopathic Neuropathy about 2 years ago . Symptoms have increased: Numbness and burning sensations, and sometimes cramping, from my knees to the bottom of my feet. The symptoms have gotten worse which led me to see my doctor who is a GP. Sleeping was difficult and I also have a sleep problem and use CPAP machine. I have had both knees replaced. One 13 years ago and the most recent one 2 years ago. With the last replacement I was swollen and bruised from my groin to my toes on the left side of my body. Over a period of several week this subsided.

The neuropathy symptoms have gotten worse and I have been told nothing can really be done by my General Practitioner. He has ordered Gammapentin 200mg at bed time. I was reluctant to take it because the side effects worried me. I am also taking meds for hypertension. Losartan 100mg/ HydroChlorothiazide (Hctz).12.5 mg, Amlodipine 5 mg. & Clopidogrel 75 mg., for a suspected TIA I had 6 years ago. From what I have researched, Losartan and Amlodopine side effects include neuropathy. Although i have not had an attack of Gout on Allopurinol in over 10 years, I was told that the Hctz caused the Gout and it was discontinued. I have not seen a neurologist. Despite this, I am a high functioning 87 year old, who runs a household and takes care of a husband on hospice. I am worried about disability in the future with this diagnosis. I am interested in hearing about other experiences wit this diagnosis.

My neuropathy began in my late 50's as minor numbness on the soles and did not initially require medication. It has progressed in four years and now there is considerable foot pain and numbness, to the point where walking is difficult. Nerve conduction tests confirmed neuropathy but addition tests found no root cause so I'm considered to be idiopathic. I'm under care of a neurologist and I take 300mg gabapentin x 4 daily and 20mg amitriptyline daily but these do not provide relief. Not sure what the future holds. I joined this group hoping to learn from others with this condition.

Hi @rnlorena, Thank you for the private message. I thought I would respond to in the Member Neuropathy Journey Stories discussion because you asked some good questions that are ones other members may also be thinking about. I agree with you that if there is any doubt or concerns, getting a second opinion is a wise thing to do.

I am close to the Rochester Mayo Clinic Campus so that has been my primary location for seeing specialists by referrals from my doctor at the local family clinic which changes every couple of years 🙂. If you would like get a second opinion from Mayo Clinic, you can find the contact information here http://mayocl.in/1mtmR63. Also, there is more information about the Florida Mayo Clinic Campus here: https://www.mayoclinic.org/patient-visitor-guide/florida

If you click the +show link above, you can read my neuropathy journey story. You might also enjoy one of my favorite websites – The Patient Revolution: https://patientrevolution.org/ It's all about doctor/patient relationships and getting your questions answered.

I did a two week holter monitor and found out yesterday what I thought was continuous palpitations that I really had sinus tachycardia. The highest heart rate was 183. I was on my way back from Montgomery to see my granddaughter off in the Army and it was in the morning when I left Montgomery to go home around 9:48am that my heart rate was high. I could tell that something was going on but I thought it was palpitations. I went to the ER last week because my heart rate was going up while I was sitting and watching TV. I am now taking a beta blocker to keep my heart rate lower for now. My cardiologist and I discussed my diagnosis of SFN and she told me that she wants me to have a stress test and a Echo to rule out that I have no blockages in my heart. I really thought I had palpitations. I have had them my whole life but not like that. I had no idea. 2 years ago I was having pains like pin prick in my epigastric and upper stomach area. I ended up going to a gastroenterologist and saw an ARNP. I was scheduled for an endoscopy and was diagnosed with silent reflux and I also have chronic gastritis and chronic esophagitis. I had no idea you could have silent. I took pantoprazole since November of 2019 and recently quit taking it. My decision. I had another endoscopy in April and I still have it. I will have to go back and discuss medications. I know that I now have osteopenia and I do not want to keep taking the pantoprazole. I also quit taking my rosuvastatin. My decision. My nurse friend sister was taking statin for 20 years and woke up one day with pain on the scale of a 9 and pains in her eyes. She stopped her statin and got better. They then started her on another statin and her pain started back. I have taking b12 and D3. Three blood draws ago I had high B12, the next one was normal, the last one was high again. I have one more test that was taken for genetics to hear the results of. I don't know if its possible that those pin prick pains I had in the epigastric area could be related to neuropathy. I am thinking my SFN may be idiopathic. I had a rheumatology panel and it was negative for those autoimmune diseases. I know there are others. I have read quite a few of others stories on here.
Question: Have other people started out with pin pricks and went on to have other issues? I am still having pin pricks and my nerve numbers are very low. This started out the first week in March of this year. Everything has been rapidly happening. I do want to pursue Mayo Clinic in Jacksonville.
Question: Is there someone at Mayo that I could talk to about getting an appt for the things I want to pursue.
After reading many stories on Mayo Clinic connect I am getting the idea that if you have idiopathic that what ever happens next will be a surprise. There is no easy answer.
I have been studying this for weeks now about SFN and also medications. I am just not sure where to start when calling Mayo. I live near Pensacola and don't mind driving over there. My cardiologist said she thought it was a good idea for me to pursue Mayo. My symptoms were full blown on the first day. I woke up and had the pin pricks all over. I see that other people who have other symptoms had a vaccination and it started. Some people start with something and it increases. From what I am seeing it depends on the person as to what is happening that day.

@johnbishop thank you for your story. Question: Isn't Omega 3 just fish oil. I believe I will eventually follow some regiment like yours to see if it helps. Years'n years ago a doctor said I have pre diabetes. Then I didn't go to a doctor for anything for 10 years and went recently (last year). Doctor said I had a A1C of 14 I think it was and a blood glucose level of 290 I think. He was flabberghasted. Mind you, I'm 5'5" tall and not overweight, at about 150 lbs. So I left his office and completely cut sugar and carbs out for 3 months. When I went back my A1C was 5 and blood sugar at 30 or something. He said they've never seen that much improvement in 3 months and the neuropathy I was feeling in my toe also improved by 50%. Oh and I had started exercising in the gym at work.

But I stopped exercising and introduced some carbs and sugar into my diet and my neuropathy worsened again. I've had it for about 3 years total and the progression is obvious and the worst it's been John like you I too have back issues. I had a major back surgery at T9-10 which I've read is really rare. They normally cut a rib out permanently and temporarily remove your intestines to do a laminectomy on the thoracic vertebre to relieve pressure on the nerve. But this doctor, fancy as he was, decided to go through my back. Well guess what? At that spine level in your back EVERYTHING comes together there. Ribs, strong, fibrous latisimus dorsi muscles, carteledge… that's why they never use to go through the back. the surgery was not successul and I've been going to the pain clinic for a decade now. I recently asked for a medicine change from Norco to Tramadol. Norco wipes out the pain if you take a lot of it but it's short acting and a lot of side effects like groginess and of course addiction. So since a family member was using Tramadol I decided to ask the pain doctor for a medicine change to Tramadol. For me, that stuff works. it's not a narcotic per se although it may be listed as in that family. Along with the Gabapentin, the Tramadol actually makes the neuropathy bearable for sleeping at night As for surgeries I also had a major knee surgery some 20 years ago where the doctor cut a tendon or something by 1/3rd and stretched it across the knee cap to reposition it. Major, major surgery. It worked for the knee cap pain but regular arthritis on the joint took over and I have been limping for 20 years. Which gives a person all kinds of referred pain due to uneven gait and body usage. Combined with unrelenting back surgery pain and now, lower back pain, the neuropathy just seems to jump on the pain bandwagon and have a hey day. I'm 63 by the way. I've been a construction or factory maintenance worker my whole life and come from a family of severe arthritis sufferers. Then add it 45 years of hard labor and you get the arthritis picture. Planning to retire in 2023 and I'm sure doing things on MY terms and timeline will ease a lot of "overuse" as one doctor described my back, knee, and body. Well you're welcome America, as I've "overused" my body to build steel mills, power plants, oil refineries, hospitals, schools, homes, and factories. I mention this because I view it as "building America" for all of us and that has inspired me to go past the "handicapped" status like most of my family has been. Not one to collect unemployment or disability, they'll have to peel me off the factory floor before I would quit early. So I've done some if not all of this to myself, for Family, Country, and God.

Interesting that you have also adopted the Wahls Protocol. I just started reviewing her recommendations. I’ve been limiting my carbs, especially white flour, white rice, and of course refined sugar. I do eat a lot of fruit though and I know that’s high in carbs and sugar. Hard to get by without it when it’s fresh and local in the hot summer!

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