Idiopathic Progressive Polyneuropathy: How to find a specialist?

Hello there @magnum52 I am a caregiver for a wife who has badly burning neuropathic feet, which I guess I would describe as not purple exactly but very deep red most of the time. The redness has gotten worse in the last year as has her neuropathy in general. The have been several people who participate in the neuropathy discussions here on Connect who have had nerve stimulators installed, some who are still actively using them. There is a discussion you may want to peruse which is here:
https://connect.mayoclinic.org/discussion/peripheral-nerve-stimulators/ and the Connect "handles" for some of the people I have heard from who may want to weigh in are @lorirenee1 @jimhd @fredjan2016 . Each currently has a stimulator of one sort or another. I'm sorry for your condition. I know how you feel about the possible curtailment of travel plans. My wife and I are starting to feel a bit resigned to her not being able to travel much in the future. What makes this a real bummer is the fact that most of my family live in the northeastern US and since my wife can't fly due to lymphedema we are relegated to driving, and driving has become a bit of a nightmare for her this past year. So my sympathies to you. I hope you are able to go to Mayo and find answers you are seeking. Best to you, Hank

Hello Chris, my name is Sunny flower. I just wanted to reach out and tell you that my heart is very heavy to learn of your situation. You are dealing with many afflictions and wanted you to know that my heart goes out to you. You will be in my thoughts and prayers. I too have many afflictions and the only thing that carries me through is my faith in God and the peace of Christ: "And the peace of God, which transcends all understanding, will guard your
hearts and your minds in Christ Jesus" Philippians 4:7. I hope and pray that you have good, loving,
strong support in your life and wish for you many, many blessings. Please reach out when you need encouragement! I have found much here on the blog and I'm somewhat new myself. Many blessings and warm regards, Sunnyflower

@magnum52 I've had idiopathic small fiber peripheral polyneuropathy for over 7 years, gradually progressing to more and more severe pain, starting in the balls of my feet, and by now involved all of my feet and is progressing up my legs. The burning pain gets worse when I'm standing still, seated and lying down. I've tried every medication available for neuropathy that my pcp, neurologist and my pain specialist have thrown at me. I have no idea how many medications I've tried. Lyrica is the one that gave me the worst side effects, bad enough to put me in the hospital. Bummer is that it's one of a very few meds that reduced the pain. The others that helped, unfortunately quit working after a month or two.

I had a spinal cord stimulator implant in June of 2017, and it gave me incredible relief. Beginning with 80% pain reduction, it began to lose its effectiveness after the first year. Then, in the second year I had to meet the Abbott rep to adjust the settings every 3 months. Now, I can't say for sure that it's doing anything at all.

Recently I discovered that I have severe spinal stenosis at L4-5, and I'm scheduled for a decompression September 24.. The neurosurgeon told me that surgery could relieve some of the pain, though it can't be predicted if it will be 50% or 5%. But I'm hopeful. The surgeon also said that the SCS implant might be adjusted and begin helping again after back surgery. My neurologist looked at the MRI results and agreed with the surgeon. I could have had the surgery sooner, but I have so much yard work that I don't want to leave the yard and gardens intended for however long recovery would be. I know. Kinda weird choosing to live with the pain for 2 months so my plants don't dry up.

Has anyone suggested going to the neuropathy group and read the stories of members' neuropathy journeys? You could pick up some new ideas from members.

We share your pain. It's really hard for people who haven't felt this level of pain to understand. The non-stop piece of it makes it so much harder to deal with.

I went into this neuropathy journey with pre-existing depression, anxiety, PTSD and suicidal ideation. Neuropathy has added another layer of pain. Chronic pain and chronic depression feed off each other. So, I find myself working with 2 sets of doctors for 2 types of pain. I'm thankful that the 2 sets understand the dynamics of a dual diagnosis, and are sensitive to the interactions. I wouldn't be here today without the care they show me. The same could be said for the support of the people here on Connect. Thanks, everyone.

Jim

@magnum52 First, I am so sorry for your suffering. I too, have severe foot neuropathy, and spend every day, most of the day, in pain. Feet throb, burn, and feel like cement. Toes stuck together. Anyway, I just had a DRG stimulator implanted in me, about 6 weeks ago. I had about 50% relief during my DRG trial, so I had the real surgery dne. However, so far, the DRG is barely helping. There is about a 3 month period after you get it done, for the nerves to heal where the wires were placed, adjustments to the electricity to be made, and recuperation from the surgery itself. Some people are lucky, and get relief quickly. That is not me, at all. When you get this DRG implanted, the ABBOTT rep adjusts the electricity immediately after surgery. Two weeks later, you go to you doc, and the ABBOTT rep comes to the appointment, and makes another adjustment. Now I am at 5 weeks after that adjustment, with maybe, 20% relief of pain. I go back next week, to get another adjustment of electricity, and perhaps, in another 6 weeks again, for another adjustment. My Doc never told me the reality of how the DRG works. I have no idea if it will work for me, at all. I wish I could tell you a happy picture, but I cannot. I will be posting more DRG updates as time goes on. If you have questions, please feel free to personally message me. I know what an awful illness this is. Lori Renee 1

I have had Idiopathic Peripheral Neuropathy for over 8 years. I do not take any pain pills, just use organic turmeric for any pain I have in my body. I also have Rheumatoid Arthritis and would be bedridden if not for taking the Turmeric every day. I have the pain and the burning, stabbing mostly at night. I am using an organic CBD muscle rub on my feet, before going to bed. It helps with the pain. During the day I have to be careful I do not lose my balance, falling is something I never want to do again! So I walk carefully holding on to things or people, I know, as I go. Pain meds only give other issues and I do not want to deal with those. I keep busy during the days with lots of projects. I would like to know if it is possible to stop the progression, it is now up to my knees. I do take ALA/Alpha Lipoic Acid daily and Benfotaimine-B1 and other vitamins as I've learned what might help. I would appreciate knowing if there are any other vitamins or minerals I can take to stop this progression. Thank you.

Welcome @healthynana, I also take a protocol of supplements which I have been on since 2016. I just have the numbness in my feet and legs but also was worried about progression. While I don't have any definitive evidence from getting tested again, I do feel like I've either slowed the progression or possible stopped it. My feet have a little more feeling than they did when I started my journey to learn as much as I can about neuropathy and what can help. I posted my story in another discussioin here - https://connect.mayoclinic.org/comment/310341/

The Foundation for Peripheral Neuropathy has a list of supplements that are known to help neuropathy patients along with other complementary and alternative treatments - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

There is also another discussion on the Protocol 525 which is what I am taking - https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Have you made any lifestyle type changes or modified your diet to help with your neuropathy?

Hello 👋🏻 I’m just trying to connect here. I was recommended to see a rheumatologist specialized on polyneuropathy. What are your experience over this matter? Is anything I should be looking up to?

Any feedback would be greatly appreciated 🙏🏻 blessings of healing ❤️‍🩹

Hello @lidiana, You will notice that we moved your discussion into an existing discussion on a similar topic so that you could meet other members discussing polyneuropathy symptoms and treatments like @jimhd, @lorirenee1, @sunnyflower, @jesfactsmon, @magnum52 and others.

Have you done any research on supplements that have shown to be helpful for neuropathy?

I have burning throughout my body

Welcome @sam1942, Sorry to hear you have burning throughout your body. Can you share a little more about your diagnosis and symptoms?