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Anyone here dealing with peripheral neuropathy?
Hi John, Thanks for that video. My burning pain and numbness is in my left foot and lower left leg only. Is that common? A foot doctor I see thinks my metatarsal pad has worn down and when walking causes a burning pain and numbness. Does that sound like what others have? Do you know of any support groups for neuropathy? I am in Richmond, VA. Where are you located?
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I’m located in Mantorville, MN which is a heartbeat away from Rochester, MN home of the Mayo Clinic. Have you seen any other doctors or a neurologist? There is some information on Mayo Clinic’s site – http://mayocl.in/2hdOodx that talks about burning feet which I think can be on one leg/foot. Have you ever had any injuries or surgery on your left foot/leg? Hoping others following this discussion can offer some information or provide some helpful links.
Thanks for the information. I have had burning pain and numbness in both buttocks and both legs for 8 years. I have seen several neurologists over the years who did Nerve conductance/ EMG tests about 6 times. Had several MRIs and CT scans. Had 2 lumbar laminectomies to remove stenosis at L4/L5 in 2010 and 2015. Most of my neuropathy is gone except my left foot and lower left leg which has burning pain and numbness that is amplified when walking or standing. In 2012 I had a full evaluation and again the told me I would have to live with the pain. I take Gabapentin and use MagniLife topical cream that gives me some relief. Looking for some more relief because it restricts my activities. Almost everyone tells me that I have to live with it. Anyone having this problem?
It seems someone would have found solutions to these type of problems.
Sorry, I think you told me that in an earlier post. The only thing I know about Gabapentin is that it is an anti-epileptic medication that affects chemicals and nerves in the body that are involved in the cause of seizures and some types of pain. It has a lot of nasty side affects. It only treats the pain and does nothing for numbness which is what one of my primary care team doctors told me when I first started looking for treatment for the numbness which is the only symptom I have. My PN had prescribed gabapentin and I took it for a month and it didn’t help. I questioned the doctor about it and she consulted the team docs who asked me what my symptoms were and when I told them only numbness, no pain they said gabapentin only treats the pain and does nothing for numbness. So I stopped taking it. From my research I have learned that damaged nerves cause the pain, drugs can help with the pain but your nerves are still damaged and I’m guessing will progressively get worse over time (from my last visit with a Mayo neurologist). This is why I started looking for ways to repair the damaged nerves. The only solution I have found is the one I posted earlier with the supplements I found in the closed Facebook Group “The Solutions to Peripheral Neuropathy”. They are a specific list of vitamins/supplements available direct from the manufacturer and/or through Amazon.com. Many, many people in the group were diagnosed with various kinds of neuropathy and on lyrica, gabapentin and other medications used to treat the pain. They were helped by the protocol and able to stop taking the pain drugs at some point in time after starting the protocol. This includes many nurses and other medical professionals who also have neuropathy.
I would talk with your doctor about it and read all of the information on what part each of the supplements plays in repairing the damaged nerves. There is also a 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.
Have you ever had any labs done to test for B vitamins? This might be another thing to discuss with your doctor. I know if you get too much B6 it can do you harm and cause symptoms like peripheral neuropathy. More info here: http://bit.ly/2gu54w3.
Hope this helps,
I joined the FB Group “The Solution to Peripheral Neuropathy” and looked at the Protocol. If this Protocol actually works, why is it hidden in a FB group and not presented to everyone who suffers from PN? I there something that I am missing?
You should be skeptical of any solution that purports to fix a medical condition. This is especially why I mentioned you have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt) in my earlier post. The only way to do this is to do your own research and be your own advocate. I have come close to buying into several different ones and even one that is similar treatment using diet and physical therapy/leg treatments…for a fairly significant amount of money.
To answer your question, I chose the group and took a look at their solution to neuropathy. It’s not really hidden. Knowing that Facebook has a group page for almost everything, I did a simple search and found several closed groups for neuropathy. The first one I joined were nice folks, looking for answers, sharing their stories and pain and what made them feel good. The group was mostly sharing how they felt but no real answers for myself to fix my condition – numbness in both legs and feet with no pain. At this time I had started reading a book by Dr. Terry Wahls – Wahls Protocol – which describes a radical new way to treat all autoimmune diseases through diet and nutrition. She has an amazing story if you want to read about it – http://terrywahls.com/about/about-terry-wahls/. This peaked my interest in nutrition and vitamins.
Then I did another search and found this group The Solutions to Peripheral Neuropathy. The people in this group are highly motivated and what they all have in common is a strong desire to get their life back. Their answer was a specific, high quality list of vitamins and supplements. The list was original a trial and error list of vitamins put together by the groups founder, who shared it with other people who joined the group. Other members started having the same success eliminating their pain, being able to get off of the drugs and getting their life back. Not all people react the same and the time has been different for different members to start feeling better. Also, the group has moderators that help with questions. if you go into the files under Info on the groups home page, you can find files that document how the elements in the protocol help with repairing damaged nerves. It’s a lot of reading but this is where you need to do the research to satisfy yourself that it is the real deal. I was apprehensive when I first joined the group but they have been nothing but open with me. They are a little rough when it comes to the language but I’ve heard worse and they are all people with a heart who want to help anyone with neuropathy. They would love nothing better than to have everyone with neuropathy have the protocol to help them heal themselves. The group makes no money and does not sell the protocol. They put the list together with links on where to purchase each of the vitamins at the cheapest cost – most available on Amazon.com, some have to be bought through the manufacturer’s website.
The groups leader does live podcasts several times a week at various times where members ask questions about the protocol, what’s working, how everyone is doing, new developments, suggestions and more. You can view the past podcasts by going to group home page and viewing the videos.
I do not suffer from the pain you do. I only have the numbness associated with neuropathy but I can share what the protocol has done for me since I started taking it the first week in September. The numbness in both legs that used to be just below my knees is now just above my ankles. May not sound like much but to me any progress is good because it means it’s not getting progressively worse which is what my neurologist said was going to happen. Others in the group that suffer from both pain and numbness have reported better results in a shorter amount of time but I think that is because each of our bodies is different or the disease/condition is different in some ways. The protocol is actually repairing damaged nerves and when the nerves get better the pain goes away – hence no need for the pain medications. I may never completely get rid of the numbness but I will be happy with whatever my new normal is because it’s better than what it was.
I am certainly not a doctor. I know that everyone is different so where something that works for me may not work for someone else. I do think it’s worth a try if nothing else has worked for you and the doctors have no answers for you. Bottom line is that I would investigate it some more, form your own answers and discuss it with your doctor. I would just remember you and you alone make the final decisions based on your best judgement from the research you’ve done.
Hoping you find something that works for you…
Thank you John for all of this information. I will do some research and try this protocol. Do you know if anyone on this site has had success with this protocol? Thanks again. Bob
Hi Bob, You’re welcome! I think you might be in for a pleasant surprise if you read through all the new member information. The videos recorded from the live posts will give you more information and show the interaction of the group and how the protocol has worked for them and questions they have. A good way to get a feel for the different people it has helped is to go to the top of the groups page and click in the search box and search for the text #theprotocolworks. Members are asked to post their share their story on the groups page and put #theprotocolworks on the post. That way someone can find all of the different people that have been helped by the protocol. I would watch one of the live feeds on the group page. You don’t have to type anything if you are not comfortable doing it. A lot of times the live feeds are done Sunday evening but it’s not a set time. It’s usually announced by a post on the groups page so you should get a notification.
I forgot to mention that the one thing I didn’t talk about is that if a nerve is damaged beyond repair (crushed, torn, etc.) the protocol can’t help in this situation.
Good luck on your journey!
Thank you John.
My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.
Yup, that’s it.
Yes, I developed nueropathy in my feet. It is from diabetes II, It was not so bad until I started taking lyrica. After I started lyrica it did not improve and it did not make the pain any better. When I stopped the lyrica the pain was much worse. Another Doctor told me to ignore the pain and that worked a lot better.
I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome. I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.
HOW DO I GET ON THIS Facebook group? I found a closed Facebook group – “The Solutions to Peripheral Neuropathy” that provides a list of high quality supplements that have helped a lot of people with PN. I have been taking the supplements for about 2 months now and have noticed the numbness has been reduced some.
I GOT MINE FROM CHEMO. DR. DID NOT TELL ME ABOUT SIDE EFFECTS BACK IN ’96 I was supposed to have gotten 6 treatments then he ordered 8 to cover his backside.
Yikes chemo brain etc.
I can give u my email if that helps?
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