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Neuropathy does improve
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.
Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine) After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy! Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum. And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant. It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal. |
thank you!
This is the most encouraging news I've heard today! My nerves can heal, and I don't have to believe these doctors who tell me otherwise. For all of us with idiopathic small fiber neuropathy, I rejoice!
ML:hug: |
Mine improved too
in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.
Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory. OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate. The program I've followed all these years is on page 3 :confused: of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months. A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain. :o From mrsD: Edit to direct new members: These three links are to the 3 part posts of Wing42's suggestions: http://neurotalk.psychcentral.com/post9580-18.html http://neurotalk.psychcentral.com/post9583-19.html http://neurotalk.psychcentral.com/post9586-20.html Keep in mind that this is what HE found helpful for himself. There is NO ONE protocol that will work for each individual with PN... people vary, and have different genetics and chemistries. |
Thanks, Liza for posting. It is good to post positive stuff too. You've probably spread a bit hope around, not a bad thing.
Yes, I agree. My neuropathy has definitely healed too somewhat but it has been a slow process and at first I didn't even recognize that it was actually getting better. But when I stop and remember how much pain I used to feel walking the dogs for a couple of blocks. I would limp and have sharp shooting pains along with other kinds of pains and have to go very slow and be in a fair amount of pain overall. It has been quite a while since walking the dogs has caused me very much discomfort. There is definitely still numbness but I don't get totally wiped out after going grocery shopping or shopping of any kind like I used to. I have struggled to stay off the pain meds and it looks like I may succeed. I take aspirin now and then when I may have one of my bad days but mostly I do the B12, Bcomplex, benfotiamine (which may be the real reason for the healing IMO, don't know for sure) and ALC, ALA, MSM, Glucosamine, NAC, and lots and lots of other vitamins and supplements. I have stayed away from doctors for a couple of years now, so I have no recent nerve velocity test to compare. Will probably try that again just for a checkup but I HATE doctors so much, they might cause me to have a relapse. |
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I'm glad to hear of your improvement. It's incredible. Congrats! :hug: ETA: Page 3 of *which* stickies? There are 3 different topic headers. LOL! |
LizaJane
That is wonderful news! It gives me much hope and I've wondered lately what a repeat nerve conduction study would show for my condition.
If you have the time, I'd like to hear more about the CoQ10 and acetyl L carnitine as well as the antioxidents you've been taking. I trust your knowledge as you're the one that pointed me to the B-12 therapy. :) Which has brought such relief to my symptoms. What did the Docs say after you told them how you were treating your condition? I'd have loved to have been a fly on *that* wall. :D |
TexasGeek
I agree with you, doctors can do more damage than good sometimes. Especially when the patient knows more about their condition than their doctor does. My experience with doctors the past few years has been anything but reassuring. However, it seems I've now been blessed with a new NP that actually seems to know about PN and the issues I've had to focus on. So in that dept I have much hope. :D
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Jarrett--The doctors showed way too little interest in what I had to say, unfortunately. But the protocol I followed is the one posted in the stickies. There's a list of supplements, and the advice: use it or lose it. You have to keep trying to use muscles that you cannot feel, or which are weak, to keep stimulating the nerves leading to them.
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I'm not a bit surprised by that attitude, LizaJane. They know everything there is to know, donchaknow. After all, they're the ones that have been to college and medical school. :rolleyes: Lord, spare me from arrogant, know-it-all doctors who in reality don't know diddly.
Back to the stickies! :) |
Insidious....
...relentlessly progressive , irreversable once established ,thats just a sampling of the prognosis of neuropathy found on most sites and unfortunantly in the mind of much of the medical profession. Little wonder that most newcomers to this forum are so traumatized by their symptoms and diagnosis. Thank goodness for the positive reporting from others on this site such as Wings and Liza. Yesterday marked my one year anniversary of this wretched disorder and I am much better. My pain has all but disappeared and my balance improved, for this I am delighted. I follow Mrs Ds regimen suggestion in the stickies faithfully. Does it help? I can only assume so , but I sure didnt get any suggestions from the Docs. And for the sake of any newcomers to this site looking for a glimmer of hope or a bit of advice concerning strange symptoms ,I shall list the following..piercing, crushing, unseen insects crawling, searing burning ,electrical shocks ,invisible rain drops , pins and needles and all around feeling lousy! So no ,you are not crazy ,and you can get better! Thanks to all....Tom
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The tickle test is to see if you feel the tip of a short length of nylon monofilament line of various stiffnesses stroking the area, i.e. how sensitive that area is to a very light touch. There are areas of my upper feet that are still numb to that. Healing from peripheral neuropathic damage and how that damage trains your brain to inappropriately feel intense pain with every little stimulus is a very slow process. Progress is measured in six month or yearly intervals, so if you start a program that you think has a good chance of working with you, stick with it for at least two years. As a general principle, if something is good for your cardiovascular health, good for your immune system, good for your general health, it is good for your nerves and brain and will allow healing. The supplements we need aren't obvious, but good diet, avoiding high glycemic index foods, daily exercise, weight control, not smoking, not drinking to excess, clean living (by that I mean avoiding drugs and other toxins as much as possible), stress reduction, enough rest, etc. are obviously good for you, and can only help your PN. |
yes...
It is very important for the newer members here to realize that THEY
THEMSELVES have to become an active part in their handling of PN. One cannot expect a doctor to do the same type of intervention for PN that they do for say, pneumonia. So people do expect something and when they get NOTHING, it seems very unfair and frightening. Because there are so many types of PN...it is best to know what you are dealing with. So diagnosis is important up to a point. But for day to day management of pain/discomfort, and for suggestions to assist and speed healing if possible, the medical community is very ineffective. Rose (B12) and I have been here over 10 yrs now (on this and the other forum). I brought P5P and magnets to the boards long long ago. I also brought essential fatty acids (omega-3) research and in some cases was even attacked for that! Now we see transfats removed from our food and omega-3s now added to eggs/mayo and peanutbutter! And I search constantly for more ideas and offer my experience with my own searching for relief. Now I see P5P in an RX designed for neuropathy! How cool is that? (Metanx). And the reverse, the methyfolate I recommended for years has been sequestered by Merck to on RX use (not an FDA move), just because they want to sell more and make more $$ on RX products! Metafolin was SO INEXPENSIVE OTC...it is a crime that this happened! So over the past 10 yrs, alot has happened to PN patients. I only hope that the new members read our board and the stickies to learn what their options really are! Edit to add in 2012... since this post was written, Merck has released methylfolate BACK to OTC status on a limited basis. Solgar offers it OTC in 800mcg tablets. I guess they didn't make as much $$ as they thought by sequestering it to RX :rolleyes: |
Mrs. D.....
After reading about Metanx, I looked for the right kind of Folate so I could make my own Metanx. I found Source Naturals "Megafolinic" at iherb http://www.iherb.com/ProductDetails.aspx?c=1&pid=7735. Isn't this the right stuff?
Ann |
what you found
is not exactly like methylfolate...but it is close. It is partially activated.
It is the OTC version of the Rx Leucovorin (which is given to people having chemo). It is ironic... methylfolate gets put into RX only by Merck, and an RX only comes off into OTC status. It is all about money. I researched folinic version and there are papers showing children who do not respond to regular folic acid supplements, DO respond to folinIC. So that is as close as you are going to get. There is one OTC item online that is very expensive that Merck is still selling to. It is a mixture of B12, B6 and methylfolate called Homocysteine defense something or other. I can't recall the name of it now, but it was VERY expensive...over 30-40 dollars a month. There is one new thing about high dose folic acid (and the other derivatives): New studies have just come out on young women who were taking high dose folic acid to prevent spina bifida in their fetuses. Some took 5mg/day, if they were high risk. These younger patients are showing up now with colon cancer at higher rates. The folate is thought to be a stimulus to those with polyps or genetic risk for colon cancer. So if you take the folinic or folic, I'd stick to the 800mcg dose for now, until more information is forthcoming. (Metanx is VERY HIGH in methylfolate--2.8mg I think) Any nutrient has the potential for fueling cancerous cells.. so I think those cells have to be present in the first place. This is why oncologists often give conflicting advice. It is hard to know which way a patient will go... 1) improve with supplement support, or 2) fuel the cancer and undermine the chemo. Leucovorin has been used for decades for chemo patients...so I don't know what the new studies will show, if anything. Edit 2012... Merck decided to release methylfolate back into some OTC products. Solgar is one who now offers it in 800mcg tablets. |
If i can make a suggestion maybe this thread should be put into the stickies area and added to by people as they progress and get better.
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MrsD, you are correct about we "newbies". I'm incredulous at all the information. I discovered this site only a few days ago and I've such mixed emotions. Mostly upset with myself that I've just sat back for 19 years and done nothing about my neuropathy. No one ever took it, the disease, seriously. I had a young son to care for, so I just kept putting one foot in front of the other.....when I should have also been researching. Back in the late 80's we did try, but there was so little information available....but that's no excuse. It wasn't until I couldn't be intubated that it was taken seriously.....and I've no one to blame but me. I'm going to set aside time everyday to read the PN threads.....I'm going to learn......and take charge of my care!
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This
is good to hear but don't be so hard on yourself Lucky,you son is lucky :)
what you were going through you stilll went to his events,you both should be happy that now you are going to take charge of your health. Good wishes to you and your family,and i'm so glad you back,I like your spirit yes you have it. And good luck on your new move, Hugs to all Sue |
Stickies
Joe--I had the same thought as you; now you've beat me to it! This thread ought to be a sticky, to which only success stories can be added. People need to be able to read about the successes when they come on as newbies and read about all the tests and protocols. It's overwhelming at first, and good news would help.
As to my own supplement regimen-it's taken from stickies, Mrs D's and Wing's recommendations, and my own thinking of anything that's good for mitochondria is good for axons. Specifically for the PN Fish Oil: 2- 3 Gm Acetyl L Carnitine: I can't find a bottle just now with my dosage, but it's the top of the recommended amount, as my carnitine levels run below normal CoQ10: 100mg twice a day. Now as Ubiquinol Antioxidants: I take caps made to prevent macular degenereation: they are variously known as EyeCaps, Visivites, of Preservision. They contain Vitamin c, Vitamin E, Zinc, Copper and Lutein. Folic Acid and methylcobalamin a few times a week. ]SAMe-in spurts, not every week. For general health and other issues: Vit D3 800 IU/day DHEA 50/day I've had trouble with Calcium & Magnesium combinations and apart, nver finding the exact right combination for me, so right now just try to eat dairy. But I will start CalciumCitrate again soon. I know I need it. |
My supplements for PN are similar to Liza Jane.
1 Attachment(s)
In addition to what she takes, I also take two B-50 formula B-complex a day, and good quality calcium/magnesium daily.
I put a lot of stress on a very healthy diet, anger and stress management, and daily exercise. Having a very active young dog is a powerful motivation to get out twice a day walking, including a daily trip to a big off-leash dog park nearby. The picture is of Rusty on a trail near where we live. Double click the thumbnail to expand the picture. |
I am becoming more and more
interested in mitochondrial failure. A lot research being done today is
pointing in that direction. 1) nerve damage from HIV drug prevention is mito in nature. We've known this for a decade now. 2) the new autism research is pointing to mito failures induced by vaccines in babies. 3) We now know that statins damage mitochondria..and that is probably how they induce PN as a side effect. If the autism research shows this is a direct link (which I think is very likely), then ADULTS who get that dreaded flu vaccine every year are exposing themselves to this stressor. The genetics research will help with this, and it might be that certain people with certain combinations of genes are more prone to mitochondrial issues. Dr. Bruce Ames who developed the Ames test for carcinogens that our FDA uses still, is researching aging. I used to have a paper of his, that I put up about his beliefs that mito damage can be minimized with nutrients. He actually makes a supplement called Juvenon. If you Google that product there are many papers on that site to explain how this works. But because it is a commercial site, I won't link to it (there are rules here about that). It is easy to find. Here is one abstract of his work: Quote:
He also has a paper out there on B-complex. I can't find it now, PubMed is down for maintenance. But in essence he believes that failures in B-complex metabolism account for many diseases we develop with aging. We do know now the folate system is very fragile and prone to failure (MTFHR) and must be helped along. The nervous system gives us signals early on that something is not working right in our bodies. But when other organs fail (liver, kidney etc) there is a long lag before we get symptoms. So I think the signals just may be mito failures for many people. This signaling by the nervous is sort of a bells/alarm to pay attention! Many papers are on PubMed: Use these keywords: Ames B + antioxidants Ames B + mitochondria Ames B example: Quote:
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My basic thinking on mitochondria is this: Lots of toxins work by poisoning the mitochondria, and it takes a large amount of energy to maintain the very long axons that eventually end in small fibers. So, if you don't know why you have neuropathy, it could be toxic, and your mitochondria might need help. Even if it's diabetic, and the increased sugar is harming the nerves, the mitochondria will have to work doubletime to grow those axons back.
On the sites about mitochondrial diseases, most of which can be quite miserable but some mild, the mainstay of treatment is acetyl L carnitine and CoQ10. I'm not sure where the lipoic acid fits in---where it is used, but it's the one supplement used abroad as a mainstay of treatment of daibetic neuropathy. Quote:
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A huge improvement here, from the original severe burning in my feet and up to my knees & those sharp electric type jabbing feelings and numbness in my feet to these days were i have no burning at all, no sharp jabbs and the numbness has nearly returned to normal, i can wear shoes, boots and can walk any distance.
I have no need to take any pain killer meds these days, i was on 300mg Tramadol SR x twice daily, only still take a much lessor dose of Endep at night but it doesn't make any difference when i have forgot to take it at times, it does help my sleeping so i have remained on it for that purpose only. For the sake of newer members reading these posts, my PN was caused through a Prediabetic state & i was low in b12, an EMG showed some large nerve damage but mainly small nerve damage detected by Quanitive sensory testing & the obvious small nerve symptoms, a 3 hour Glucose tolerance test showed an above than normal response to a glucose challenge. In my case correcting the insulin resistance by a sensible diet which included high fibre low GI foods and loosing weight, some exercise was needed and vitamins were B12 [mostly b12 Cynocobalaimin] only the last few months was able to get the preferred type of B12 " Methylcobalamin " and shots of b12 hydroxocobalain off my doctor, a multi B every day and vitamin C, i added Alpha Lipioc Acid only a couple months back which took care of the rare slight burning i had left. Nerve's can heal if they are in the right environment. |
Where do I find your program?
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Help!!! Where do I find the program you followed. I don't know what you mean by the stickies?I have suffered from severe neuropathy since 1994. I have a spinal cord stimulator implant, use Duragesic narcotic pain patches (two 100 mcg patches every 72 hours) and have vicodin and morphine for breakthrough pain. I have just had tarsal tunnel surgery with an implant in my foot which has eliminated some pain. I lost my right leg due to a blister (I am diabetic) in Nov of 2005 four months after I lost my husband of 3 years to cancer. I have thought if only I could have one day free of foot pain it would be so great. but I decided that it would not be good - if I ev er had a day free of pain I couldn't bear to go back. Help. JudyH |
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Just to make sure you get there in one piece... http://neurotalk.psychcentral.com/forum20.html Also, notice at the beginning of a topic it says stickie? |
bumping up
I am bumping this up to update the MetaFolin (methylfolate)
availability. A person from the company Solgar has sent me a PM saying that OTC MetaFolin will be made by them, and is due out in late June '08 or so. Methylfolate is available as FolaPro, by Metagenics, but it is very expensive. The Solgar product will not be that costly I am told. Look for it at iherb.com ...I'll be leaving for the summer soon, and will not be able to do computer stuff (no electricity etc) so some of you will have to watch for it. I'll look for it in September when I return. |
Never give up researching.
I was a member of the old forum for a long time. Zocor caused my Neuropathy
in 1999. It use to say it on the box but no one would beleave me. When my pain was 10 all the time i wanted to die. I prayed and Jesus helped me get in touch with a friend and he told me to find a chiropractor with a high voltage therapy machine.I found one and the machine went to 400 volts.Five treatments before i could feel the 400 volts. 43 more treatments and i could only stand 15 volts. Bought me a TENS and use it most every day. I take most of the vitamins recommended but only after i research them.I took 240mg of morphine for 4 years. Last year i lowered slowly to 60mg. Go to a new pain doctor and he put me on Lyrica and it is helping more than the morphine. The bottoms of my feet are still sore and can;t walk to much but my pain is 1-2. I am going to heal my self of this horrible desease or die trying. I am 76. |
Wow! Great story of what you've been through! I'm glad you're doing so much better. We *can* heal from some of this. And that gives the rest of the people that come here and are newly Dx, hope.
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What is MSM and NAC
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Texasgeek - what is MSM and NAC that you reference in your post? I found the list for mrsD of supplements know to help but can't find those two. Thanks for much for your help... |
What supplements did you take?
Tom -
I have read the list of supplements on the stickie and am anxious to get started on them. However, newly being diagosed I am still going through the tests to see if the cause can be determined. Can you advise which of the supplements did you take? All of them? Will you share the cause of your PN? Thank you! |
Where is this sticky?
Hi, I'm new to the forum. I have idiopathic peripheral polyneuropathy for 1.5 years now with worsening nerve conduction tests. Also other fun symptoms. I've had the MRI/CT scan, spinal tap, muscle biopsy, lip biopsy (that was a lot of fun;) and now a nerve biopsy from which I am (hopefully) recovering. One of the replies below mentions a protocol on page 2 or 3 of the stickies that has perhaps contributed to some recoveries.... this sounds interesting and worth trying. I found the stickies but cannot find the article - can anyone advise? As you can probably tell I have never been on a forum before, mind you I've never had a significant medical or other problem before!
Thanks, look forward to hearing from you. |
lost newbie found stickies!
Hi Judy! You're in the stickies. The stickies are subjects of such importance that they're 'stuck' at the top of the board so everyone can always get to them. Go back to the main page of PN and the very first 3 topics are stickies. The one you want is the second topic. That contains a lot of info about different types of treatments and supplements, vitamins and other things that have helped people with PN.
Just to make sure you get there in one piece... Also, notice at the beginning of a topic it says stickie? thanks Jarret, I wasn't quite sure where the stickies were either. I can't believe I found this site that has many different opinions & suggestions about PN. I've been in pain for about 4 yrs now, on my feet every day, and by time I get home, just want to put feet up to rest. Frank |
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Barbara |
Just came back here on a whim. Remember me? My nick on the old board was SteveInTrouble.
Burning flesh, couldn't wear clothes, radiating nerve pain, yadda yadda. Dx of small-fiber neuropathy. All gone. It was a huge amount of work. And expense. But most days I don't even remember I had it. I credit the info I found here, and on the TOS forum. Thanks all--and good luck! |
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where are the stickies? i'd like to see liza jane's list of supplements
i can't find the stickies that have lize jane's list of supplements. how do i get to it?
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The post numbers are in the upper right hand corner of each post. Your post on this thread asking the question is # 36 |
supplements for PN
I just stumbled on to this site yesterday and am so excited at, what seems like, the first real hope for my sometimes unbearable pain. I am up to 1500 mg. of Neuronton with only minimal relief. Before giving my PN story, can I just cut to the chase and ask for a complete list of the supplements you take? What dosages do you recommend? And at what times of day? With or without meals? Have you or anyone else written up a supplement plan that works? Thanks in advance for someone's, hopefully, speedy response.
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there is no one recipe
for supplements (non drug interventions) that will work equally for everyone.
The causes of PN are many. And people all vary in diet and metabolism, and genetic details. There is a trend showing however that drugs and some toxins may poison mitochondria, so that using supplements that target them, may help. But there are vitamin deficiencies due to disease (pernicious anemia), or drug use (use of acid lowering drugs), genetic inheritance of genetic errors that then necessitate higher doses (B6, folate), malabsorption due to gluten, fructose intolerances, or Candida infection. There are diseases like insulin resistance, diabetes, hypothyroidsim, that contribute to PN. So it becomes a complex issue, and a recipe cannot be crafted to fit all people. Each needs special consideration. |
Advice please to treat my PN
Any advice on how to heal them? I have had idiopathic small fibre PN for 13years. I am still getting relapses and 5 neurologists do not know what to do including one in the US. I live in the UK. Any advice would be very much appreciated. tony13
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