Member Neuropathy Journey Stories: What's Yours?

It appears this topic has been left untouched for quite some time. It seems an excellent topic, especially for someone like me who has had his first visit to a neurologist only this past Monday. Although I've yet to receive a clear-cut diagnosis, I would welcome hearing from others what their early "suspicions" were, suspicions that eventually led to a peripheral neuropathy diagnosis.

For me, long before I even heard of PN (ten years ago?), I noticed that myusual good balance was going wonkers, especially at low-light times of day (dawn, twilight). I hadn't had any falls, or at least none that I thought might have been the onset of a Big Problem. Doctors, of course, always ask if you've balance concerns. If I answered 'yes,' the response was ordinarily along the lines of 'Ah, vertigo!' or "Dizziness, I see.' I'h have to protest: 'No, no, I've never felt dizzy. The room was never going round and round.' I found it maddening to come up with the right words to describe the sensation. Eventually, I did––or I came as close as I probably ever will: 'It feels like I'm walking on a ship's deck in a rolling sea––not a storm-tossed sea, just a rolling sea–––and I have a tough time walking a straight line.'

Over the years, I've seen many physical therapists. Even though they'd nod when I'd use mu rolling sea analogy. I'm convinced they thought 'Ah, vertigo!––or (sigh!) old age. (I'm 76.) It's been a long haul, leading up to my finally seeing a neurologist. Although I've yet to receive a diagnosis of PN, I know that's what she suspects. If it turns out all I have is old age (no surprise there), I'll be a happy camper. If it is PN … well, that's why I joined this forum.

Wishing you all well!
Ray

@ray666 My first indication that something was going on was a tingling sensation in my feet and legs. After some time I went to the neurologist, who did a nerve conduction test and determined that I had pn. Over the past ten years, the diagnosis has been refined as it moved on to pain, then burning in the balls of my feet, and slowly included the tops and bottoms of my feet. Several months ago pain moved up into my ankles. Tingling and pins and needles have been the first sign in each area, and those sensations now are above my knees.

There are quite a few kinds of neuropathy, with different symptoms. I don't know if balance is typical of pn, but for me, it's one of several signs of another neuropathy, autonomic neuropathy.

Have you had other symptoms beside balance? What tests did your neurologist do? I like the way you described your "vertigo" as standing on a ship. I need to remember that because I have a hard time describing it to my doctors.

Jim

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?

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.

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.

Hello @bryanbay, I would like to add my welcome to Connect along with @jakedduck1 and others. Sorry to hear the medications do not provide any relief from your neuropathy pain in your feet. My small fiber PN was also diagnosed as idiopathic but there are no medications that help with numbness so I started doing my own research until I found something that has helped me. I shared my story and what helps me earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/.

It's good that you are doing your own research and trying to learn more about your condition. The more you learn, the better you will be able to advocate for yourself and hopefully find something that helps. Have you thought about or tried any alternative or complementary therapies to help with the neuropathy?

@bryanbay
Good afternoon,
You might want to ask your physician if an increase in gabapentin could provide better pain relief. The usual dose for Neuropathy is 1800mg & up although I’ve known people who took less and up to 7000mg.
I took 3600mg and it had no effect on my Neuropathy or seizures. My brother takes 3200mg and its very effective for him.
Good luck,
Jake

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.

@bryanbay None of the usual pn meds helped me, including Cymbalta. A few months ago I restarted Cymbalta at 90mg at bedtime, but backed down to 60mg because of the awful muscle twitching. After a few weeks, I added 30mg in the morning, and I got a note from my neurologist this morning, suggesting that I increase it to 120mg, spread over the day. Lyrica helped a lot, but reactions sent me to the hospital, so I can't take it, though it's worked for a lot of people. My siblings all say that Gabapentin treated their pn pain.

So, we can't ever assume that what helps others will help us.

One thing I did was to meet with a pain therapist a couple of years ago for 6 sessions, and a couple of things she suggested still help me (some of the time). One thing I do is to focus on the pain and analyze the various sensations. Then I focus on the sensations that aren't pain. Another thing is to focus on a part of the body that feels good, with no pain.

Have you considered a pain therapist?

Jim

Thanks @jimhd, After some googling it appears Cymbalta and Amitriptyline (Elavil) are both used to reduce pn pain. I suspect its an either/or when it comes to those two meds. There are no side effects so far with the amitriptyline. I agree with your thought that each of us will find the drug combo that works best. I'm edging the gabapentin daily dose up from 1200 to 1500mg/day. So far, I have not considered a pain therapist, but will look into it.
Tony