Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
I have recently been diagnosed with a form of myelopathy (inflamation on the spine with no known cause). My symptoms have been persistant for the last 18 months (burning, tingling, and numbness in feet, legs, knees, thighs, buttocks, groin, waist area). Tried IV prednisone (8 weeks) and oral prednisone, 60 mg daily, ( 5 months.). Endured harsh side effects and currently weaning off the prednisone. No relief. Symptoms persist 24/7. Next up: mycophenolate(CellCept), another drug that suppresses the immune system followed by a long list of serious side effects, including the risk of skin cancer or lymphoma. Also comes with the FDA Black Box warning. Regular blood checks also required. This drug was designed to prevent rejection of transplanted organs, but evidently is an "off-label" use for fighting inflamation. Because of the severe side effects and other health risks associated with this drug, I am extremely hesitant to begin a regimen to help ease my symptoms. My quality of life has suffered greatly, and I am looking for alternatives. Any suggestions?
Jump to this post
Hello @upnort, Welcome to Connect. There is another discussion on myelopathy that I think you might find more helpful. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where you can meet other members sharing your symptoms and learn what they have found that helps.
> Groups > Brain & Nervous System > Want to know if myelopathy is still a form of neuropathy
Have you tried any anti-inflammatory supplements like turmeric or has your doctor given you any suggestions?
There is a post in the above discussion that you might find helpful…
I am more than willing to try turmeric as well as other
anitinflammatories. My leg numbness is progressively getting worse by the
weeks. My case seems to be unusual (diagnosed a year and half ago) in the
fact that I do not experience pain – only extreme numbness of my lower
exttemities. My once active lifestyle has been put on hold until I find
something that will help alleviate or at least minimize the this extreme
numbness. I am reluctant to go on another prescribed medication (CellCept
is what my neurologist wants me to go on next) as the side effects continue
to take their toll on my body. In addition to the turmeric, are there
other possible solutions dealing with my numbness? Thanks.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, rwinney
Perhaps myofacial release to help release tightness in the fascia and get blood flowing. Some self manipulation as well. Gravity may help which I learned here in the forum… If you are able to lay on the floor (or your bed) and pull your legs straight up to rest against the wall. As much of a 45 degree angle as possible so blood flows down. I do a number of these things for my aching, cramping, numb legs. Can't go wrong with Tumeric either like @johnbishop said. All the best to you. I hope something brings a bit of relief.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, lioness
@upnort I only have numbness with my small fiber PN and had the same concerns. It was just below the knees in both legs and I didn't want it to get worse. I've been taking supplements since Sept 2016 and they seem to have slowed or stopped the progression. After 2 months I thought it might reverse the numbness since it got better – went from just below the knees to just above the ankles. Not much but definitely no worse in 3 years so I consider it a win. I posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
Liked by thankful
@upnort: My pain came from my brain and body not communicating with each other, I had two strokes. I was to have acupuncture for my bladder. I noticed a difference the next day in my pain level throughout my body. It started with the pain above my waist, I don't have any except when I hit my arm or did something I should get pain from. This was not why I went to have acupuncture. After 6 sessions I am still having pain in my feet and scheduled for more acupuncture. I did not want to share this until the pain in my feet was gone too. Your request told me I couldn't wait any longer to tell about the bonus I had when I had acupuncture for my bladder. Was it a fluke, about waking up the nerves in my body, not to send signals to the brain that I was in pain? I don't know. I told my PCP doctor what was going on, he was very happy. He didn't prescribe it, another doctor did, but was willing to do what it takes to help my recovery from the strokes. Even the acupuncturist was surprised, acupuncture is not prescribed for stroke "victims". I can't say more because this wasn't to happen. Do what you want to do. Good luck.
Liked by Jim, Volunteer Mentor
My neurologist explained that my pain comes from: my nervous system is dying and sending out erroneous pain signals – they are real to me of course — the system is supposed to send me burning feelings when fire is touching me – but my feet and legs feel like they're burning when no fire is any where around. I tried everything available over the counter: foot fungus medicine, lidocaine spray/cream, aspirin/tylenol et. al, cbd cream, menthol ointment, before I went to my family doctor. He gave me gabapentin, then as my condition progressed (nervous system dying further up), we had to increase it until he sent me to a neurologist. She added Lyrica, we played with when to take which one and how much, then had to increase both, until she sent me to a Pain Specialist. There would be no point in me going back to Tylenol, creams, sprays, or herbs at this point – I already know they don't work for me. We are at the top dosages of medicine that the politicians in my state will let doctors prescribe, the next level is narcotics – I don't want those. I don't like anything that makes me sleepy. I will be useless once I have to start taking those. I looked into TENS implant, my insurance company won't pay for it. On this website, I have read about lidocaine infusions and some other procedures that required tests, hospitalization, bed rest for days — all for limited or temporary results. I'm allergic to marijuana. I'm still researching alternatives – perhaps there is something in the medical world that I have tried/heard about. Peggy
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:
FDA's HEALTH FRAUD PAGE
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.
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:
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!
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!
Liked by lioness
Very sorry to hear about your disease. Unfortunately your story is not unique among this group. Nerve pain is THE most difficult pain to control. I suggest you ask your Pain Specialist (who should be a licensed Anesthesiologist) as they will have access and experience with the methods that work the best. As far as TENS, Lidocane, etc, try to find a specialist who will set up trials for these methods. I had a Tens but it did not help. I am allergic to Lidocaine, and have tried everything else. It sounds like your doc is working with you to find the best combinations of timing and dosage for Gabatpentin and Lyrica. Lyrica is the only thing that helps me although Percocet and a spinal infusion of Dilaudid (both narcotics) seem to control it better than anything else. I don't like being groggy either but so far the Percocet or DIlaudid has not caused that side effect. But everyone is different. The pain is reduced but i still have days when I lie in bed and scream in pain. But they are not as often as they once were. It sounds like you are doing what you can. The nervous system is like a chain of sausages strung together with pain signals traveling along the chains/sausages. My particular PN is called Demylinating PN. The little sausages are covered with a film called Mylin. My mylin is dissolving and causing the signals to still travel, but run into traffic jams, road blocks and mudslides – all of which disrupt the flow of the nervous signals and change the way the brain interprets the signal it receives. I sometimes have pain that I cannot find any words to accurately describe the pain. It is so frustrating to look at my legs or feet and see that they look perfectly normal, but the pain makes it seem like they should be mangled to have all that pain generated!
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, steeldove
@rosy33 I have to disagree with you. I have no idea what doesn't sit right with you but I have been a member of the group since it's early start in 2016 and it is most definitely not a scam. To start with, it is a not for profit 501c3 organization registered in the State of Florida. The second thing is that the only supplement the group currently sells is the Manitoba Hemp Oil. They only did this because members were getting expired/bad hemp oil when ordering online through Amazon due to shelf life and stocking by the companies. The person who started the group has a commercial size refrigerator and made a deal with the hemp oil manufacturer to direct ship quantities to his address where he can refrigerate and keep them fresh until a member orders them. Any profits from the sale of the hemp oil to members goes to a Help Another Member program (H.A.M.) which the group started to provide members who cannot afford the protocol a 30 day supply until they can purchase it on their own. I regularly donate money to support the program myself. I would not give my money to support anything that is a scam to people with neuropathy.
If you do a search of the group on Facebook using the phrase #theprotocolworks, you will find the stories written by each of the members who have been helped and no longer struggle with their pain symptoms from neuropathy. You can also find my story in the group. I've also posted how it has helped me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. They also are no longer dependent on pain medications and have been able to taper off. You can also search the Files section of the group to find the different supporting research for each of the supplements and how they help with providing the nutrition needed by nerves.
To your point, there are definitely a lot of scams out there taking money from people suffering from neuropathy and you have to do your own research and make your own decisions based on what you believe. I can tell you that the group does have some haters since the person that started the Solutions to Peripheral Neuropathy Pain & Discomfort group was a member of another group that had some issues which is why he started a new group for folks that were interested in getting off of the brain numbing medications that continually need to be increased to make the pain go away (my words/thoughts). The group may not sit well with some people because they want you to do your own research in the group before asking questions. They've had quite a few bad actors from the other group that will join with fake names and spread discontent.
Here's the link you are referring to which is a report written by another groups Facebook group's member/leader. If you read the rebuttals you will have a better understanding of how this so called scam report came about:
Happy Friday and hoping for a pain free day for all!
Liked by thankful, Jim, Volunteer Mentor, rwinney, rosy33
I read your message and I really want to believe. I've wasted so much time and energy trying all the different programs. The latest is with my doctor for daily vitamin packets which turned out to be something I can't use because of the high amount of B6 in the multi. All together that farce cost me a total of $600, $400 for the office visit and $200 for the vitamins that I can't use. I just get so that I find it hard to trust people anymore. I have idiopathic PIN for 20 years and have not been on any prescription meds for the past 10 years. I'm trying to research a way to help with healthier nutrition and vitamins because I really believe it starts in the gut. I plan to use the vitamin packets I have left sans the B6. I will order the Protocol once I do that. Thank you for your message and I hope you have a happy weekend. 🙂
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor
I certainly can understand how you feel and what you have been through. I also have idiopathic small fiber PN and have had it for over 20+ years only bothering to get it diagnosed in 2016 because of the numbness seemed to be spreading faster. I don't have pain so have not needed medications but have spent a lot of money on many things that have not helped. What got me started looking at nutrition as the answer to at least slow or stop the progression of the numbness was a book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story that you can read here: https://terrywahls.com/about/about-terry-wahls/.
Full disclosure ☺ — The group is working on their own product to be available sometime in 2020. This came about because many of us really have a problem taking so many pills – 22/daily. The new product will combine some of the supplements into about half of the number of pills which hopefully will make it better and the cost should be about the same – around $6/day.
I honestly don't know if the protocol will work for you even though it has helped myself and many members of the group. It is definitely worth a try if nothing has helped you in the past. I don't believe it's an overnight thing where you start taking the supplements and the next day your symptoms are gone. I think it does take awhile and you have to stick with it. I didn't see any difference until after 2 months on the protocol when my numbness seemed to decrease. I haven't had any progress since then but it also hasn't gotten any worse for me which is what the neurologist told me would continue to happen.
Hoping you have a great weekend also. ☺
Liked by margottaylor, rwinney, rosy33
My 2 cents on the protocol…I feel that unless you have adverse health reactions to any of the protocol supplements, it cant hurt. Alpha Lipoic Acid and Acetyl L Carnitine (also B12 and CoQ10 for headaches) were all referred by my neurologist. He wont/cant speak on the other products due to lack.of medical evidence but I've done my own research. Brewers yeast so far is my only long term concern so I take half the dose for now. Truth is…
when there is no medically proven evidence, we have no choice but to live on hope and a prayer. 😇
Liked by John, Volunteer Mentor, thankful, Jim, Volunteer Mentor, lioness
John, there is a PR company in Washington DC that specializes in smearing non-profit organizations. They are hired, of course, by for-profit companies that want the non-profit out of the way so they can do something less-than-kind to make more profit. They did a massive ad campaign saying that the director of Goodwill Industries makes millions of dollars a year (he doesn't, he's a retired minister who makes less than $100,000; my husband got to know him when he was on the Board of Governors). They started the scandal that ASPCA backed legislation to kill shelter animals (they certainly didn't). The company starts a new non-profit org that sounds like 'concern for animals' or 'citizens for equality' or something along those lines – the accusations are made by the new non-profit which folds soon after they are discredited but some damage is already done. People on facebook repost the headlines and stories from newspapers that no one has heard of.
A relative of mine accidentally met the guy who owns the company when she was working for Humane Society in Washington DC. The same company also starts rumors about medical procedures when a competing company hires them to. Peggy
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, iceblue
That's totally amazing and despicable!
Liked by John, Volunteer Mentor
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
version 188.8.131.52.6Page loaded in 1.257 seconds