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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 17 hours ago | Replies (6026)

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@mathewv

Thanks John. I'm trying to focus exclusively on success stories or treatments that have helped people. Or perhaps info on the latest medical breakthroughs, if any. Any promising new procedures/treatments?

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Replies to "Thanks John. I'm trying to focus exclusively on success stories or treatments that have helped people...."

@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

@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