Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

thank you for this valuable info – in fact I have 30 years of experience of lllt (low level laser therapy) and am just constructing a laser which is scanning the beam over an arey you can determine, I will use the length of my leggs and irradiate over the feet as well – trying to apply about 4 joules/cm2 on the area, of course it is a self financed project based also on work done by Juanita Anders, Ph.D., Prof. of Neuroscience, Edw. Hébert School of Medicine, in Bethesda, Maryland, I am in contact with her to develop a protocoll, of course this is private and willl not be followed by a publication, however you may, at some later time, find laser therapists in the US that will perform lllt. I will be glad to receive a copy or scan of the publication you are mentioning and will, when back home, look for the one I have from the US. I know a few internationally reputated MD`s and Laser Therapists who all encouraged me to try out which I will be doing soon. Stay in touch, best wishes.

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@swiss

I am Swiss, born in 1939 and have been diagnosed idiopathic polyneuropathy some 13 years ago, the illness progressed slowly so that i now have regular chronic pain which can move from 2 to 9 out of 10 at certain times such as after a sleep change horizontal to vertical. Only cold – warm baths of feet and leggs can influence it positively although I am on a daily medication of 400mg Palexia retard (an opioid), 350mg of Lyrica and 900mg of Gabapentin. I do not like this quantity of chemistry having to pass through my system, I guess my liver does not like it either. Only under certain circumstsances and by medical
prescription can we obtain the new medication based on Marihuana, I wonder what could help such attacks, it is like a flame is passing through the feet into the leggs and back with burning and itching pain. It may stay with me for a few hours or go away within 30min – 1h. The bilateral knee arthrosis does not help to make my walking any better, I have been using a walking stick in particular when taking my doggie for a walk. Cold is my biggest enemy so that I have created all sort of socks out of thermal leggins or similar material covering parts or the leggs or all of it, thicker or tinner, depending of the season.
My neurologists never have an idea how to fight my chronic peripheral nerve pain, Lyrica seems to be the state of the art and all kind of other trials
did not show any improvement other than Opioids which I would like to avoid and slowly move out of it. For that I will go back to a hospital in order to check what could be reduced first and in what relationship to the rest. Anyhow is is frustruating and I wonder if anyone has some new idea, I am also read anytime to answer questions you may have by mail. felix

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do you have a list of pain reducing medications used in the USA mainly for pain in idiopathic polyneuropathy? I would like to compare this with the most common medicine in Switzerland (Gabapentin, Pregabalin) they do not really work on me. With opioides I have some releave but I hate to depend on it for much longer.

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@lisamaria

I developed peripheral neuropathy because of chemo. My oncologist says the only thing studies have proven effective is gabapentin (neurotoxin) It doesn’t work for everyone and if the dose isn’t high enough it won’t work at all. I think it has gotten slightly better but my fingers and toes and soles are pretty numb and cold makes it worse. I know others suffer more severely and at least I’m not in pain but you might want to ask your doctor about medication. I’m glad to read above there may be new treatments down the pipe. Ones based on science, not snake oil

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Most interesting, this is the 2nd on Laser Therapy, thanks a lot – I have just replied to another one, see on Mayo Clinic Connect, These support my effort to make my own laser with high output and possibility of scanning the legs and see what happens!do you no longer need any pills such as Lyrica and other?I am still trying to get off Opioids and this may be the answer.Nice to hear you have succeeded to get rid of the pain  – does it last you think or will you repeat the treatment?

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@lindy1956

My husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.

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Hi @gratefulone, @jazzy27 and @lindy1956.
I just tagged you in a discussion about CIDP where you’ll meet others talking about this condition. Hope you’ll join us there:

– Anyone been diagnosed with CIDP? http://mayocl.in/2m6rsMw

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@melperez1223

I was recently diagnosed with peripheral neuropathy and autonomic neuropathy. I’ve had pain in my feet (primarily left), knees, hands, chest pains, heart palpitations and dizziness. Nerve conduction tests were negative, but my Neurologist performed 5 punch biopsies from my ankle up to my upper arm and they all came back positive for small fiber neuropathy. I am taking 600 mg of gabapentin for 2 weeks and will move up to 800 mg 3 times a day. I have primary Sjogren’s syndrome.

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I had some type of neuropathy for about two years, not much help from local University Medical area, then research food medicine.  Turmeric helped, a small daily dose.  And started a supportive spiritual communication in Philippines on line, helpful.  Was short of traveling to Mayo.  Recovered from neuropathy in about two years. Recently with some dizziness(again, a foggy term: can be veritgo(positional ), imbalance(proprioceptive), but with second inspection to my MRI over a year ago(first by Radiologist), and now Neurologist), seems no physical cause(tumor or bleed).  The symptoms of dizziness are less, and good sign in neurology.  Much research on science level in food medicine today, and don’t over look spiritual support systems, even if you do not believe.  JIM>>>>

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@swiss

I am Swiss, born in 1939 and have been diagnosed idiopathic polyneuropathy some 13 years ago, the illness progressed slowly so that i now have regular chronic pain which can move from 2 to 9 out of 10 at certain times such as after a sleep change horizontal to vertical. Only cold – warm baths of feet and leggs can influence it positively although I am on a daily medication of 400mg Palexia retard (an opioid), 350mg of Lyrica and 900mg of Gabapentin. I do not like this quantity of chemistry having to pass through my system, I guess my liver does not like it either. Only under certain circumstsances and by medical
prescription can we obtain the new medication based on Marihuana, I wonder what could help such attacks, it is like a flame is passing through the feet into the leggs and back with burning and itching pain. It may stay with me for a few hours or go away within 30min – 1h. The bilateral knee arthrosis does not help to make my walking any better, I have been using a walking stick in particular when taking my doggie for a walk. Cold is my biggest enemy so that I have created all sort of socks out of thermal leggins or similar material covering parts or the leggs or all of it, thicker or tinner, depending of the season.
My neurologists never have an idea how to fight my chronic peripheral nerve pain, Lyrica seems to be the state of the art and all kind of other trials
did not show any improvement other than Opioids which I would like to avoid and slowly move out of it. For that I will go back to a hospital in order to check what could be reduced first and in what relationship to the rest. Anyhow is is frustruating and I wonder if anyone has some new idea, I am also read anytime to answer questions you may have by mail. felix

Jump to this post

I had some type of neuropathy from 2006-2008; not much help from Medical University Center(nerve tests), / much depends on quality of neurologist.  Tried Turmeric , food medicine based on chemistry/science; helpful.  Along with start of spiritual support friends in Philippines, symptoms passed , short of going to Mayo.  There is much in food research as medicine, the science is there even though many food suppliers are short of science based insights.  JIM> Now lately, over a year dizziness; again the neurological maize, to define the symptoms to the right medical words, half the battle, and then get back into the food research and always rely on my spiritual support friends in the Philippines.  Good Luck. JIM>>>>

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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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@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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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

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John,
Thanks for the suggestion about the Wahls book. I just checked it out of the Hennepin County Library. I’ll read the book and see if I can incorporate some of Dr. Wahls’ recommendations into my life. Even if none of her suggestions work for me, I’m always intrigued and inspired by a person’s struggle to overcome one of life’s challenges, especially something like MS.
Margaret

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@magg

John,
Thanks for the suggestion about the Wahls book. I just checked it out of the Hennepin County Library. I’ll read the book and see if I can incorporate some of Dr. Wahls’ recommendations into my life. Even if none of her suggestions work for me, I’m always intrigued and inspired by a person’s struggle to overcome one of life’s challenges, especially something like MS.
Margaret

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Hi Margaret, I try to follow the basic diet she has but still have my days. She has some great breakfast recipes for green smoothies which I make from my breakfast 4 to 5 days a week. I do think nutrition plays a major part in a lot of autoimmune conditions. I just found an interesting YouTube video that talks about the importance of gut health. It’s 44 minutes long but worth watching.

How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg:

John

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