Living with Neuropathy - Welcome to the group

@mathewv, I think stem cell therapy holds promise but it's just not there yet and I have yet to hear of a successful neuropathy stem cell treatment although there have been a lot of clinics claiming it works and the FDA has warned against them.

I attached some notes I took at a Minnesota Neuropathy Association meeting August 2018 where the speaker was discussing the outlook of stem cell treatments for neuropathy. The last section of the notes has links to why it's not ready for prime time treatment yet. Also the FDA has put out several warnings on these clinics popping up all over the U.S.

FDA Warns About Stem Cell Therapies
— https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm

18Aug04-MNA-Mtg-Notes:
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2019/01/18Aug04-MNA-Mtg-Notes.pdf

Hi Mert. I have small fiber neuropathy dx by two biopsies in both feet and hands. I also have complex regional pain syndrome in both feet and left leg. I just asked my primary care about muscle cramps and he told me to get magnesium citrate which I haven't done yet! I can also relate to laying down and the pain in my calf and thigh and butt. Have had injections in sciatic nerve that have helped for a while.. I find neurologists useless and was told the same as you IAIYH. I have been seeing a pain management doctor for eight years now who is absolutely brilliant. I have had a spinal cord stimulator for eight years and find it helpful, more so for some areas than for others. My foot pain is the worst. A botched foot surgery by an orthopedic surgeon caused my complex regional pain syndrome (CRPS). My pain management doc is very knowledgeable about CRPS. Perhaps someone near you knows more about CRPS than most. It might be a place to look. If there is more you'd like me to share, I'd be happy to. Blessings, Barb

@mathewv

I think I can truthfully say that a high percentage of people with pn have found relief of some kind. At this point, the closest to reversing the progress of pn is to slow it down. There's no known cure for it yet, though many scientists and drug companies are working on it, with clinical trials happening all the time.

Until a cure is discovered the primary goal is symptom management. The list of treatments is a long one. I have tried every medication that's designed for neuropathy, with varying degrees of success. Some did nothing and had no side effects. Some did nothing but had unacceptable side effects. Some did deliver pain relief but had unacceptable side effects.

That leaves me with the treatments that game significant pain relief with manageable side effects. The one medication that has consistently over the past five years reduce my pain level is morphine sulfate contin. I continue to take it. As I was increasing the dosage of Lyrica I was enjoying pretty significant pain reduction - until the side effects put me in the hospital for a few days. Bummer. Lyrica is a great medication for many people.

Last year, my pain specialist prescribed Desipramine, with some success, until urinary urgency kicked in, and I was making up to 24 trips to the bathroom one day. So, the doctor moved on to Imipramine last September. Within a week my overall level of pain went down from 7 to 4 or less. I enjoyed it while it lasted. By the first of this year, my level is back up to 7-8. I haven't tried tapering off it yet to see what that would do to my pain.

The treatment that gave me a pain reduction of 75-80% is a Burst DR spinal cord stimulator implant. I had the implant in June of 2015, and I still have it. For two years my pain level was low quite consistently. Third and fourth years, I needed to have the settings adjusted every three months. Now, I'm starting year five. To test its efficacy I turned the stimulator off for the month of March, and felt no change. I turned it back on in April, again with no change in the pain level.

My next step may be a Dorsal Root Ganglion stimulator implant, which is a new technology that is able to target specific nerves more precisely. I have an appointment next week with a neurospecialist to discuss this.

So, the first answer to your question is, "No". There's no known treatment that would reverse neuropathy.
The next point is that yes, there are treatments that could slow, or possibly stop the progress of neuropathy. The next point is that at this time, the focus of doctors is symptom management, and for most, any treatment option will probably be a temporary fix.

Bottom line is that a medication that helps 25% or 75% of the pn population may do nothing or may have serious side effects for the rest.

That's probably not what you want to hear, but it's a reality that we who have a form of neuropathy have to face. We all hope for the day when a definitive cure goes on the market. Have you been diagnosed with neuropathy, and if so, what sort of symptoms do you have? Other members of this discussion can offer you their experiences, some of which might help you.

Jim

Barb, that is exactly where I am. Foot pain is the worst, especially "frozen" feet, but the pain is moving around all over my body, including arms, legs, high back, low back, and ankles. Injections did help me for awhile too. My primary sent me to a rheumatologist but she is doing tests I have had done before to no avail. Latest is bone density, but I think you can tell when it is not the bones, when the pain is nerves and muscles... Discouraged, but whatever you can share is helpful. Thank you.

Thanks Barb. I will definitely try the magnesium. thanks again

Hi Mary, so thankful to hear it's not just me. Will definitely be following up.

@maryflorida, Good afternoon. I just opened a discussion about "frozen" feet. If I didn't know better right now, I would think my feet were frozen in a block of ice. What are you using to get back to normal?
Be safe and protected.
Chris

@maryflorida here is the new discussion @artscaping created.

Icy feet and ankles with Small Fiber Neuropathy....anyone?
-- https://connect.mayoclinic.org/discussion/icy-feet-and-ankles-with-small-fiber-neuropathy-anyone/

Thank you. I do have the feelings in my hands and arms as well. Yes I have had the test done just recently and have also gone back to my Primary. She has referred me to another Nuerologist as she says It appears I have lost at least 50% of the strength in my right leg and foot. Hopefully someone can get an idea of what to do with me.

Thank you, My primary told to me to start drinking tonic water as it is Quinine until I can see the next neurologist. She has also prescribed a low dose of Baclofen for nerve spasms to take at bedtime.