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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: 1 day ago | Replies (2974)

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@johnbishop

Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem - damaged nerves which cause the pain signals to be sent to the brain.

I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's 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's out of sight, out of mind for a lot of folks. Here are the ones I've 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

You can also link to this great resource from 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 something that works for me and has helped a lot of folks with PN get off of 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 pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:

http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372

This is the website for Facebook Group I found - Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) - http://www.facebook.com/groups/spnpd - website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. 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 haven't made any more progress since December but I'm 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. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

Hoping all of my neuropathy friends find a treatment that works for them!

John

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Replies to "Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some..."

Hi John,You posted in a September 10 response a link of some kind. I have tried a number of times to access that link and all I get is "no page found"
Arnrob

@johnbishop
Which supplements do you take specifically for neuropathy? I am unable to tell from the sites you have provided. Thanks!

Exactly what supplements are you taking? Dose and strength? I have ideopathic Neuropathy and do not want to take Px drugs. I have a shelf full of vitamins. But would like to know what worked for you.

Could you share what vitamins you are taking?

@johnbishop...I tried to join that FB group but it asked me to answer questions that don't exist. Am I missing something? Says my request is pending but I need to answer questions but there are no questions? Pam

I joined the facebook solutions group but something didn't sit right with me. I found a link which states that it is a total scam. Because I'm new here I'm not allowed to post the link. I think you might be interested in reading it, ripoffreportdotcom. I am so sick and tired of all the scammers out there who really don't care about our suffering, it's only how they can profit from our misery!