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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Mar 19 8:46pm | Replies (2901)

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@pedie

Have dealt with peripheral neuropathy ever since two bouts with cancer--radiation with both, and chemo with one. Gabapentin does nothing; a therapist agreed that the only thing to do is just keep moving--and so I do. No cure--no meds that help.

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Replies to "Have dealt with peripheral neuropathy ever since two bouts with cancer--radiation with both, and chemo with..."

Hi @pedie - you are right about the meds and neuropathy. They do nothing for numbness and are all directed to mask or block the pain from nerve damage. I'm guessing your neuropathy is from your chemo treatments. I've had numbness in my feet for over 20 years but got a diagnosis in March 2016 when I decided to start becoming my own advocate. My neurologist diagnosed me with idiopathic small fiber peripheral neuropathy which was in both legs from just below the knees down through the toes. He also told me there was nothing that could be done - no meds or topical creams/oils help for numbness.

I started doing a lot of reading and online research and have tried many things that didn't work. Since there are no drugs that will fix or repair damaged nerves, I started looking at nutritional and mineral supplements. Someone pointed me to a book by Dr. Terry Wahls - Wahls Protocol Diet and I got the book to check it out. She suffers from Multiple sclerosis (MS) and did her own research into treating her MS through diet and nutrition. She has an amazing story to tell if you want to read it - http://terrywahls.com/about/about-terry-wahls/. This got me looking at nutrition and diet from a different viewpoint.

In September 2016, I started taking a specific group of over the counter high quality supplements/vitamins. By the end of the year the numbness in both of my legs seems to have reversed a little or at the very least has stopped progressing which is what my neurologist told me it would do. He said it would continue spreading upward in the body until if affected a vital organ and told me to let him know if it gets worse. To date the numbness has gone from just below my knees to just above the ankles. It might not seem like much progress but to me it means the upward spreading of the neuropathy has been reversed or at a minimum stopped. It may not work for everyone but it has definitely helped me. Others taking the protocol have been able to completely get off of the pain drugs once they are on the full protocol for awhile. I found this treatment in a Facebook closed group which has now become a 501c3 - Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/spnpd/).

There are a lot of scams out there so it's always best to do your own research to avoid them. There is a lot of good information on what to look for to avoid a scam:

Avoiding scams and snake oil treatments post on Mayo Connect:
http://mayocl.in/2gcdDNt

FDA's HEALTH FRAUD PAGE:
http://bit.ly/2n6kpHr

Hopefully you will find something that helps with your neuropathy.

John

Yes, advocate.  I am a retired nurse, similarly.  Had neuropathy when I retired, visited the large city medical University Center, not impressed(with a nurses background), knew the routine. I was not going to take NSAID's to make the physician happy(and research knows what high dose NSAID's can do to kidney's(over looked by care giver).  Yes, there is plenty of science based reseach daily, science based food medicine and biotech. advances.  All physicians are not generic, but they are taxed with either the motive in that profession(if solely for money), a disaster.  Or taxed with paperwork.  I used turmeric for two years, and ready to visit Mayo, but symptoms (neuropathy) subsided.  10 years later, since trip from Holy Land, some type of dizziness. Again, a science based research trail. First to define what type of dizziness(many generic physicians want to say vertigo and go through some simple action).  There are folks out there with passion for science, passion for patient and passion for science based neurological treatments. Also relied on an overseas spiritual support group, in the Philippines, which help allay the neurological changes.  Yes, holistic advocate, science, spirit and a new day.  JIM>>>>

I have had PN for years and years. It went full blown crazy in August 2018. I tried Gabapentin for my pain and it seemed ok at first. After taking it for several days, I realized I had a severe allergic reaction with swelling. I could only eat liquids, no solids for about a week. The PN pain was severe, so I was prescribed Cannabis. This has made a huge difference in my pain relief. I forgot to take it one day and wow, I can't function without it. It is expensive, but I would give up most anything before I would stop this med... it works!