Yes, neuropathy does improve. I discovered MaxiEnergy, a mitochondrial booster chewable cocktail tablet in the fall of 2011 after two years of a protracted diagnostic process. This product is composed of CoQ10, d-ribose, Aceytl L-Carnitine,Creatine Monohydrate,Alpha Lipoic Acid,L-Carnosine and Ascorbic Acid.
I have almost no neuropathy in my hands and encouraging progress with my feet although they are still problematical. You can learn about MaxiEnergy at
Oramune.com. My posts describing my particular journey through peripheral neuropathy are in this thread. I remain hopeful that I will be free from this curse in a short time.

Mrs.D., my TSH abnormal since October 2011 even with the adjustment of Synthroid dosage every 5 weeks. I wanted to try the R-Lipoic Acid but when I asked my n eurologist, she said to wait until my TSH becomes normal. Though, she added that there has has been no concrete studies on the side effects of R-Lipoic on hypothyroidism, its better to be on the safe side.

On VitB12, my result last May 2011 was 908 pg/ml (211-946), but you mentioned that there is no known toxicity on VB12 so I am taking now 5000mcg. Did you say that if my symptoms do not improve within 3 months, this means that it will not do much. One thing I notice when I started taking the Methycobalamin is that I dont get so tired as I used to. Though I still feel tired but I know that this tiredness is caused by the pain.

Hi Terry,
I am glad that your symptoms are getting better. I see that you have been a member since November 2011, does that mean that you have been diagnosed of PN around that time or earlier?

May I ask, what is the cause of your PN? I am sorry, you may have posted about your condition in the past but I did not read it.

Thanks.

Re: Doc,
 

Hi Ger,

Sorry I missed this. I'm taking pretty much what most folks here are taking, including yourself. I had a near-miraculous response to R-Lipoic - 48 hrs and no more burning/pins & needles. I take methyl B12. Tried Acetyl L Carnitine, but couldn't discern any difference after several months, so I stopped it ($). I take B5 (pantothenic acid) for a couple reasons, PN being one, and it helps the RLA (even though my PN is not diabetic). It stopped the residual shocks/needle jabs.
http://www.diabeteslibrary.org/View....ntothenic_acid

Started the stabilized RLA this month - no difference yet - may be too early to tell. NAC - been taking it for years - first because I used to take a lot of acetaminophen (NAC protects the liver), but still do because it's a very powerful anti-oxidant (like RLA). B-complex, Ester-C (can't tolerate ascorbic), D3 (1000IU/day), E (Tocomin - no idea why I take this except a doctor said I should several years ago due to my age & being male.)

That's pretty much it for PN. Benfotiamine is on my list.

Overall, I'd say I stopped my PN's progression when I began the B12 & RLA (or it may have been coincidental - that happens with some middle-age PN). Since then things have gotten a little better, but almost imperceptibly (which is another place the journal has helped). I also finished off an old scrip I had for amitriptyline, and I think that actually helped a lot (neurogenesis?), but I don't really have any valid medical reason to ask for any more.

I stopped glucosamine/chondroitin/msm after taking it for years after seeing this:
http://www.quackwatch.org/01Quackery...ucosamine.html
Can't say it was doing anything anyway - some people (wife included) swear by it - can't hurt.

I take some hormone supplements for adrenal fatigue/suppression from chronic pain, but that's whole 'nother ball-o-worms...
http://neurotalk.psychcentral.com/thread156416.html
They are working GREAT! :D

N.B. I tried a little hot sauce & bleu cheese dressing on my chicken last night, and my feet burned for several hours afterward. Forgot I had an inflammation response to nightshades. Better this morning.

Doc

Doc......As I previously mentioned, I am taking 100mg' of the Best Stabilized R-Lipoic Acid. Are you taking more than 100 mg's? After starting the R-lipoic, I began losing weight. I have lost about 10 -12 lbs. over a 8 mo. period. (Have not change my eating habits.) They do seem to make me a little hyper. Could be coincidence.

I read the info on the Pantothenic Acid (B5). Is this the brand you are using? Also, what is the dose you are taking?
Again, thanks so much for your input.
(Ger)

NAC = ?


Thanks.

N-Acetyl Cysteine

http://en.wikipedia.org/wiki/Acetylcysteine

http://www.webmd.com/vitamins-supple...TYL%20CYSTEINE

http://www.raysahelian.com/acetylcysteine.html

Doc

I've heard of some people (mrsD, IIRC) getting a bit agitated when taking more than 100mg/day; I have not experienced that myself. I wish it would help me lose weight! :eek:

I started on 100 mg/day of regular RLA. I tried 200 mg, but didn't notice any better effect, so I dropped back down to 100 mg. I bought a lot of the stuff on sale (cheap) and was trying to use it up before starting the stabilized type. Then I thought to take the stabilized in the morning, and the regular in the evenings (killing 2 birds, so to speak, but using the less powerful type in the evening in case it did cause agitation). That's where I am now (using up the last bottle of regular). I still have not noticed any agitation (or difference for that matter).

:confused: What brand? I'm taking Puritan right now, only because it was the best deal at the time we ordered. I'm taking 500 mg twice a day, which is probably higher than necessary for most folks, but it's doing triple duty for me, and one of those requires a higher dose. My plan is to decrease the dosage once I have met certain goals.

Doc

Cidp
 

Is there a thread on this site for CIDP specifically? My Peripheral Neurologist told me that I do infact have Chronic Inflammatory Demylenating (sp?) Polyneuropathy. I did however have yet another Peripheral Neurologist tell me otherwise. I, however do believe that it is CIDP because it's getting worse as the years pass by. I've never heard of Sjogren's Picture before, though, I'll need to look that up.

Welcome to NeuroTalk:

No not yet, but we have as of now, 252 threads scattered on this forum about it.

If you click on the main page... Peripheral Neuropathy at the top of any page on this forum, and go to the upper right where "search" is, type in CIDP into the search box. The search box only appears on the first page here.

All the threads will be listed. I cannot link to a search, because it is time driven and the link expires. So you will have to do it.

We've been here almost 6 yrs now and there are many things you can find with the search function.

Many of the CIDP patients eventually get put on IVIG to see if it can halt progression. Many CIDP's are autoimmune as well, so treating the autoimmune can arrest progression.

http://emedicine.medscape.com/article/1172965-overview

CIDP is a more progressing and serious type of PN, because it can attack motor neurons as well as sensory. It is taken more seriously by doctors for this reason. Purely slow progressing sensory only PN is not treated in the same way. Sensory only is more common.

edit to add.... I just saw your other post at our Introductions forum.
If you were unconscious for a month? YOu could also have some brain damage, like stroke patients get. Central brain damage can also cause chronic pain. This is called central pain syndrome.
http://en.wikipedia.org/wiki/Central_pain_syndrome
If you have THIS I don't think IVIG would work as well.

Thanks needed to hear neuropathy can heal--I'm into natural health--new at all this due to a neck injury, and hope can get off pills, and stay natural--thanks for the hope.

a review paper on supplements/alternative therapies useful for PN
 

I found this: Peripheral Neuropathy: Pathogenic Mechanisms
and Alternative Therapies
After reading through the posts here, hardly any information is new :)
Still, it can be useful as a scholarly reference and it has info on doses too.
sUsY

Thanks for the link. I'm putting it up in the Supplement thread.

Some of the things appearing in that paper, echo me quite a bit:confused:

even magnets! Oh, well.

The paper is good for showing studies and results.
Thorne is the company that mostly is sold thru doctors.

Does this thread also apply to trigeminal neuropathy? Is there a chance it will improve in time without treatment?

Trigeminal neuropathy is usually a compressive disorder.
So most of the treatments are to locate and remove the compression.

However it is a long complex nerve with many branches, and like other nerves, may react to other environmental insults.

If other symptoms are present in other nerves, then that would be a hint that something more global were going on. If only confined to the face then the trigger is most likely in the head/neck somewhere.

There are healing things/supplements you can try.
Fish oil or Krill oil, helps nerves. And lipoic acid can help.
It also depends on whether you had blood work done on B12 and Vit D to see if you need those. Labs in US are typically low in range, so if you are below 400, you could take a oral methylB12 daily and see if that helps.

What/where are the Stickies? I am trying to find the protocol LizaJane posted in the stickies.

thanks.

Hi Dockmaster
You are on the stickies :)
If you look at the forum as a whole you will see the threads on top are "stuck" or pinned there so that they always remain at the top for reference.

http://neurotalk.psychcentral.com/forum20.html

I'd like to add that when you come here off Google, you cannot see our index, etc. You are entering a long active thread.

At the bottom of this page are page numbers. Go to page ONE and then start reading. That is where this particular sticky begins.

Click on Peripheral Neuropathy on the top of the page to view the other 2 stickies if you choose.

Years Later...
 

Spilling through the many layers of info in this wonderful web site... Many years later, thank you for the hope!
Heb1212

Have PN - Will Improve
 

Thought I'd add my 2¢ to this thread, FWIW. I'm getting better, little by little. It's a journey, with hills & valleys, hazards, roadblocks, detours, etc. Hope & Heartbreak.

At my worst, about a year & a half ago, I had all the classic symptoms: numbness, pins & needles, cramps, electric shocks, needle jabs, burning pain, hypersensitivity. Numbness extended halfway up to my knees. Moderate peripheral edema extending halfway to knees.

About that time I began my regimen of methyl B12, & RLA. Tried some others that didn't seem to have any effect, so stopped those, and tried others. Still trying/rotating supplements. Also on High Protein/Low Carb diet - little/no sugar - sugar exacerbates symptoms.

IMO, from what I can tell, RLA, B12, & B5 have been most beneficial to me. Burning pain has been pretty much gone since beginning RLA w/ some tolerable flares. Have a prescription for gabapentin, but have not taken/needed any since beginning RLA. Numbness, pins & needles, cramps, electric shocks, needle jabs all greatly improved. Remaining symptoms now confined to front half of feet. Still have some hypersensitivity in feet, some cramps, occasional "rudeness" of the feet. Still have moderate peripheral edema extending halfway to knees. Massaging helps both edema and PN.

I feel I have pretty much attained my initial goal of arresting/stopping progression, and am now looking into pursuing healing/neurogenesis.

Doc

I'm always interested in hearing about others who have made progress in arresting the progression of PN. You mentioned the hills and valleys, hazards, road blocks etc. along your way.

To me that is the hard part in determining if you're getting better. The improvements are sometimes so slow that you measure it in months or even years rather than weeks.

As you started healing did you experience periods where it seemed that it was maybe getting worse instead of better? Did the flares slow down for a considerable period of time where you thought you making notable improvements only to have them come back and stay on for a near equal amount of time? I have experienced these effects (but not so much lately) which put some doubt into my mind that I was improving to any significant degree.

I know things have improved for me especially lately, but that kernal of doubt seems to rise up with a series of flares that come out of no where. I know the diary is the best way to gauge progress, but I would be interested to hear your thoughts.

Yes, that would be the hills & valleys. I could have stated it as 3 steps forward and 2 steps back, etc.

My flares have been diminishing in frequency, duration, and severity as I've learned about this ailment and figured out clues & triggers applicable to myself. I got into some sweets earlier this week (incorrigible chocoholic/sweet tooth) and I'm paying for it now. :rolleyes: / :o

My expectations for healing are... humble. I'm probably in a bargaining stage right now, so I'll take what I can get. Tomorrow (metaphorically) I may reach beyond my grasp. One day at a time. ;)

Doc

My PN just slowly got better. I would have times, only minutes, when I would have a bit of pain in my feet, then it was gone. I think the nerves were healing. I mostly just improve with no pain. I take so many supplements and foods that heal and no sugar, low carbs that it has all been a great slow improvement. I am thankful.

Before, I would only wear my UGGS to walk since my feet felt funny. I now walk barefoot on my wood and tile floors and it doesn't feel weird! It feels GOOD! :p

July 2012 will be the second anniversary of my diagnosis. My PN has not gotten better yet, but I am hopeful. So far, the only relief that I get is in winter. When the temperatures are cooler, my symptoms are less pronounced. However, my symptoms in summer seem to be getting a little worse each year. Maybe it is because summers are getting hotter each year. I do not know. Also, I find it more and more difficult to walk for very long because of the pain and dysfunction (feels like I am flatfooted) that walking brings on.

But how can I complain when there are some among us who are completely debilitated by their illness, and I am not there yet.

Hi Nervous,

Hope springs eternal. I, too, am hopeful that things will get better.

Last winter was my first winter with PN and it was extremely difficult for me to wear heavy clothes. Or, even just light sweaters, or just anything that touches my skin for that matter. I prefer the season now for the simple reason that I can wear less clothes, e.g. shorts and sleeveless. I have very hypersensitive skin and painful feet. I also could not walk and stand for a long period.

What are you symptoms? What supplements do you take?

I have a list of symptoms and of supplements. I'll have to get back to you on all that. But I appreciate your concern.

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

This forum, particularly mrsD, have been a great help. I am easily discouraged by doctors — who, as everyone here knows, are inadequate — but NeuroTalk has been a substantive help and I am grateful.

Cheers. :)

Improvement can be Relative
 

I think "improvement" can, and should, be viewed in different ways.

For someone whose PN is advancing spreading, slowing or halting progression is improvement.

For someone whose progression is halted/stable, lessening of one or more symptoms is improvement.

For someone whose symptoms have lessened, regression is improvement.

Getting past any kind of hurdle, like panic, fear, & negativity is improvement.

Setting goals and achieving them (small steps) is improvement.

Adopting a positive attitude/outlook is improvement, and every little improvement is cause for further positive outlook, which is further improvement.

Improvement is where we find it. :Clever: Sometimes we don't notice it unless we look for it.

Doc

I will glad to hear about your symptoms and supplements, and compare notes.

stickies
 

Hi,
I'm new to the forum. Where would I find the stickies?

Thank you,

Since the poster you are requesting has made his contribution here, YEARS ago, there have been many others and newer information available here.

Here are his two stickied posts:

http://neurotalk.psychcentral.com/post9580-18.html

http://neurotalk.psychcentral.com/post9583-19.html

But you are welcome to read our subforum which has grown quite a bit since 2007.
Go to the main Peripheral Neuropathy page and the link to the subforum is at the very top.

Finally- some relief - and hope!
 

I have had PN for almost 15 years, slowly worsening, as I had one doctor after another give up and tell me to just get used to it. The part that bothered me most, other than the painful symptoms, was trying to understand why this happened to me. I tried all kinds of diets, supplements, treatments, etc., to no avail. The problem was not finding the reason in the first place.
Finally, after all these wasted years, a doctor asked the gluten question. I have gone fanatically gluten free for almost 5 months. I understand that gluten burns out the B vitamin receptors in the gut, causing the deficiency at the root of the problem, and that it takes usually about 6 months to grow them back. I also understand that it can be a couple of years then to grow back the nerves.

So far, I am very encouraged. I have lost over 35 pounds of unwanted weight, and I am able to move much better than before. I still have the painful tingling in my feet at night, but I can go longer without problems, and I no longer have to pop ibuprofen to get through a day of work. Skin problems, like psoriasis, are gone, and I no longer have the pre-diabetic food cravings I had. I'm almost 66 years old, and feel like I've taken 10 years off how I look and feel; in only 5 months.

I know there are many causes of neuropathy, but I have learned that gluten is a major cause; it's also a major cause of diabetes, which is itself, a cause of neuropathy. It's hard for me not to be angry at the doctors who made thousands of dollars shooting electricity through me, and didn't care enough to walk across the hall to their own medical library, to read about celiac and neuropathy.

For anyone interested, there are several good references on this. The one I recommend is "Wheat Belly," by William Davis; about $15 from Amazon. I believe this can change lives.

I wish the best for all who are suffering from this; I'm convinced it can improve.

Steven

Congratulations to you Steven!

You might want to get tested for B12 levels. B12 is often severely impacted by gluten issues.

You should be at 400 or above in US units. Don't accept "normal" as many lab ranges are still outdated.

Steven, congratulations on your progres! Great news indeed.

I want to ask you a question about gluten, but I do not want to take this thread off topic. Please PM me with your contact info.

Thanks.

Nervous

Steven, GREAT news that you are improving. Without gluten, sugar and bad carbs and the right supplements I have been improving steadily. It is such a wonderful thing.

I have been off gluten for 1 1/2 years. The gluten can actually cause weight gain since so many foods without gluten have bad carbs, but I am so happy for you! I stopped those things, but ADDED foods that are very high in nutrients. I always ate healthful food, but now it is even more important. Easy to stay on target when I see the improvement.

I lost 17 pounds after stopping sugar and bad carbs. Since they cause inflammation with nerves etc, taking that away was my answer along with gluten. Now the supplements are able to heal. Sometimes the right things have to be done in order.

Congratulations! Nerves heal so slowly but it is wonderful! I agree, you do need B12 levels checked, Vit D also.

And this is another opportunity--
 

--to give a shout out to JCC and the Gluten File, who and which, I think, have been instrumental in spreading the word about celiac/gluten issues and their links to many non-gastrointestinal symptoms, including neurological ones:

https://sites.google.com/site/jccglutenfree/

Thanks! I've been revving up B1 and B12-especially the B12. It is a good idea to be tested, though.

I'd be happy to answer anything I can; I don't know how to use this for PM, though.

There are different ways. One is to click on the name of the poster you want to send a PM to. A drop-down menu will appear that will include that option. Click on it.

If you have any PMs waiting, you'll be advised when you log on (and also via email). Once you've logged on, click on Unread Private Messages in the upper righthand corner of any NeuroTalk page.

Doc

Thanks, but I still don't see the right link in the dropdown menu; are my preferences set wrong somehow?

I do not see private messages active in your drop down.

Go to User CP which is in the upper left under the NeuroTalk logo,
click on that , and go to options. In there is "enable private messages".. It is the 4th white box down. You have to click on it.
Make sure you hit save, at the bottom of the page.

Then you should be able to send PMs.