Member Neuropathy Journey Stories: What's Yours?

I can't believe that you've actually sat with a doctor for more than 15 minutes. The nurse comes in, takes my Blood Pressure. Asks me questions the doctor walks in the doctor walks out. I said, don't I get to talk to her and she's gone. And I followed this woman down the hall. Excuse me, I have questions. Excuse me, excuse me, and she just kept walking like I was not right behind her until she went through 2 swinging doors that closed and locked. This is after waiting 5 months to talk to somebody, she called in like 5 prescriptions. Because you had taken blood work But she never looked at the medications. I was on and how contradictory they are with one another.
And as you've read then, the next doctor sent me for all these mrison tests never called me with the results. I got there myself that the day I took them. But I called her texted her, and messaged her 3 times a day, every single day for almost 4 months, had still never had a reply from her that it became like a running joke with myself. But see if she'll ever answer me, and then I get my bill. Well, that was it. Then, I had to wait 8 months, but I think I found somebody who is willing to really go deep with me. She spent over 3 hours having me go over the step-by-step. And all these tests she goes, look. I'm not certain these are all, but we're going to look for Everything. And I burst into tears, somebody actually listened, and then I fall and had to put every test on hold. Because I can't go into metal machines with, a metal plate in my arm the elderly really do get shafted in this country. It's such a pity and I'm willing to pay out-of-pocket. Not that I'm a rich woman, but I want answers. I can't even buy my way into an appointment. I hire you the concierge doctor she's as good as urgent care.
And I'm not sure if it's a Florida thing because I don't know where you live. But I can't imagine that you get treated like this in New York or any major metropolitan area. We're old news. Soon to be older.
And it really starts to play with your mind because it messes with the quality of life. And if you don't have a great reason to live, and you're always in pain, you think, what's the point? And then I come back strong and fight the good fight.
I really hope that they find answers for you as well. Because nothing hurts me and I'm not sick. I just have no feeling in my leg when I go to stand every now and again. And I go down hard, I guess it's this old age fat lady thing... I'm no longer a size zero with my five inch stilettos and little crop tops boo hoo.

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?

@johnbishop can you post the B vitamins and dosages in the protocol?

@malmor
How did you get an MRI with a metal plate in your arm?
Are you with concierge now?

@malmor
How did you get an MRI with a metal plate in your arm?
Are you with concierge now?

In 2000 , I was moved 1500 miles to take charge of a struggling office. The job was stressful and I had no friends in the area. Soon I began drinking everyday. Eventually it became a problem. A few years later I was at a funeral when I noticed a tingling in my feet and shins , I had no idea what was going on but I ignored the problem. Within 5 years, I had a serious problem with movement, with numbness and with pain. It got to a point that the first thing I did when I came home from work was to slam a couple drinks to dull the pain/ tightness. I had no idea what was happening but I did suspect alcohol, however I was deep into addiction.
One day I found myself at St Mary’s, I had acities, liver and kidney failure . I quit drinking. By now the tingling was in my hands and basically I couldn’t feel anything from my knees down, I have had bad wounds on my feet , felt nothing.
I started exercising, walking on a treadmill holding the sides, biking, etc. Eventually I was taking 20k steps per day. I found myself able to move and get around normally, however the tightness and pain and evening issues still exist. I had mentioned this to my doctor but she sort of ignored it and I didn’t press it till about 6 months ago when the frustration was overwhelming me. They put me on gabbapentin, doesn’t do anything for me , in fact no supplements do anything. I have been to a neurologist, had MRI’s , doesn’t seem like there is much if anything they can do , now that their tuning forks show that I have no feeling below my knees. Not sure of anyone else but some days it really gets to me, the constant reminder that gets to me.
Recently I took some time off from exorcise ( just a couple days) and bam, like I went back in time to being uncoordinated and walking stiff legged. Like backwards 7 years. So now I wonder do I need to walk 8 miles a day to stave off these symptoms? Will I eventually not be able to walk should I stop exercise? I haven’t had any swelling in my legs or ankles since I started exercising, will that come back if I stop? Turning 60 shortly, doesn’t really seem like the health professionals in my life have no answers other than to tell me “it’s possible”. No matter what happens, I wouldn’t change the 5 year reprieve I have had from the most challenging aspects of it, which is movement.

@jum13, You say that no supplements helped, but what and how did you choose? My neurologist recommended Vitamin B1, B12 and AlphaLipoic Acid some 7 years ago. I have been using them as well as a couple of other supplements like Lion's Mane, Magnesium, Omega3s and Acetyl-L-Carnitine. I don't know that I could have told you that first year if the supplements were making a difference, but now, years later, I am certain they have helped. Still, I agree that exercise is a major factor.

@mamamarch I tried all of the above. I do take B1 as I have been deficient also a multivitamin and magnesium. The gabbapentin actually does work for stopping the lightning bolt pains I would get in the evening. As far as being able to move and have agility, I have concluded, for me I have to keep moving. The annoyance factor will always be there 24/7 . Yes I usually need to take something for sleep. My biggest fear is going back to barely being able to walk and all that comes with that. Of course at 60 how long can I do 20k steps a day? What do you do?