This type of neuropathy is rather specific.

Here is an article about it:
http://brain.oxfordjournals.org/cgi/...full/123/4/710

Its conclusion is that given the side effects of treatments, it may be best to not treat this specific autoimmune issue.

You would have to discuss this with your doctor. Your benefits would have to be weighed against the risks of the therapies.

I would add fish oil to your B12 regimen, because fish oil has some anti-inflammatory actions, and has shown some benefits for myelin repair. It is easy to take, now there are enteric coated ones, and benefits for the rest of your body too.
I would also explore quality curcumin. This spice is showing reductions in inflammation of the brain, and blood vessels. It does not appear on the list linked to below. One needs enhanced absorbable curcumin, however, not just any old type.
So if you wish to try this new powerful anti-inflammatory, post back to me and I'll give you examples to buy.

This link is for multiple sclerosis, but since they have similar myelin attacks, suggestions may apply to you too.
http://www.msrc.co.uk/index.cfm?fuse...how&pageid=772
It is a longgggg list... and you may not need all of them.

PM
 

I've read of so many types of neuropathies that I don't know where to start. All I know is that my PM is supposedly caused by WM (waldenstroms), a very rare type of cancer of the blood that has to do with too many IgM's in my blood. Hopefully, with successful treatment of the cancer, the PM is supposed to subside as well.

I do know this, when I take my vitamins like I'm supposed to, the "bad" days aren't nearly as bad as they had been. Specifically a B complex, plus B12 extra, among others.

Right now, as I type this, there are more mistakes than there are correct words. The PN has settled in my right hand more than the left, and I spend more time making corrections than I do anything else. Sheesh ! ! ! This is so frustrating. And, me with such limited patience to boot.

The first series of Rituxan treatments for the WM did hardly nothing. From 7,900 down to 7,100. The doctor put me on a regimen of steroids once a week for 4 weeks before again starting another regimen of Rituxan. Hopefully, this will help the Rituxan do its job.

Just venting~~~~~

Lasers also show promise.

Improved sensitivity in patients with peripheral neuropathy: effects of
monochromatic infrared photo energy.
DeLellis SL, Carnegie DH, Burke TJ.
Gulf Coast Foot, Ankle and Wound Center, Tarpon Springs, FL, USA.
*edit*
Adv Skin Wound Care. 2004 Jul-Aug;17(6):295-300.


http://www.ehow.com/about_5036278_co...europathy.html

aeb105,
did you have this treatment?

No, I have not done the TENS Laser. But I have done the laser blood irradiation on my own. I purchased a couple of 650nm 1mw laser diodes, you can place them on an artery or stick them up your nose 20-60 minutes up to 3 times a week. I feel in perfect health after a session. The other more powerful caliber 850nm-935nm for neural healing is the stuff I am really interested in as well. I will be back later tonight and tell you more. I have seen many positive rat studies on damaged spinal nerves.

*edit*

added by Chemar
for more on this topic please see http://neurotalk.psychcentral.com/thread108998.html

This bascially sounds--
 

--like the next step/enhancement of anodyne therapy:

http://www.anodynetherapy.ca/

http://www.anodynetherapy.net/

Try either 2-3 cloves raw garlic everyday(can crush and put in sandwich is good) or take Allibiotic with your other regimen. I think you need a solid antibacterial. I do this as well and my symptoms have improved big time.

Sorry that went to the wrong place. I was affirming what Liza said about taking an antibiotic of some sort. I feel the same way. I feel 5 times better now that I take this everyday. If you don't want to eat raw garlic, you can take Allibiotic(contains garlics's Allicin). Garlic by the way is nature's most powerful antibiotic and it leaves the good bacteria in your gut and doesn't cause Guillian Bar Syndrome, unlike pharma antibiotics.

What about balance?
 

Hi;

My balance is so far off, I can't stand up alone even for a few seconds. I use a walker to get around. Will that ever improve? I was told that I would only get worse. Also, I have drop foot in both feet and wear leg/foot braces which help some but don't really do the trick. Also do water aerobic 3 days per week.

HI there: I'm new to this forum, but have learned alot about PN already. I was diagnosed with idiopathic simple fibre neuropathy about a month ago. I have pins and needles, which become a burning in my feet pretty much all day long, along with some pins and needles in my hands. But the past few weeks, I've started having a pressure feeling on my bladder--no incontinence, just a "have to go" feeling. I also started having a strained feeling in one eye, with no vision problems. Does anyone else have any of these symptoms with their PN? I find it all very scary, as until a few months ago I was a very active grandmother (mid fifties). Any help and encouragement would be appreciated! Thanks.

I was interested to hear of your spinal situation. I have had my spine fused (many years ago) and was wondering if my diagnosis of PN was correct, or if this is really all from my spine, since I've been told I have some stenosis and 2 bulging discs. I guess the symptoms can be quite the same. I'm waiting for an appointment with either a neurosurgeon or orthopaedics person--whichever my doctor decides.

diagnosed with peripheral neuropathy
 

I was diagnosed with peripheral neuropathy about a year ago sent out the door without any advice.My nights are a nightmare from dusk till dawn.The pain is an 8 of a scale of 1-10 burning pain that makes my feet feet like they are in a vice.They are sensitive to touch.just putting on a moisteriser hurts so muchMy balance isnt the best.

I dont know what to do or how to handle this.I fall asleep from exhaustion of crying .but I have had enough.

.I want to find ways to deal with this.I have disc degeneration also and a hip spur also type 11 diabetis on insulin and tablets

but with all of this .... I do have a sense of humour:winky:

Sallyanne,

I completely understand what you are going through. I too have trmendously painful PN. Walking is a chore and very painful. My life has been turned upside down. I will say that in order to sleep and help take the edge off the pain I use Medical Cannabis. I have found it to be the only method for taking the pain level down to a manageable level so I can sleep. I still wake at night but the pain is not that bad.

During the day at work I have yet to find anything to help ease the pain. I cannot take any type of pain meds as I need my head 100% clear. I am a computer systems engineer and a small mistake could cost my customers millions of dollars. So I just deal with the pain during the day. When evening comes I am wiped out both mentally, emotionally, and physically. I have created a healing/relaxation space in my house that helps me to relax and help things calm down.

I wish I could recommend some other things but I have nothing else. Hang in there. Look to family and friends for emotional support. God Bless!!!

Dewey

So the pain is because your nerves are still healing and not because your brain starts receiving pain signals for the rest of your life, right? Pain is propotional to the healing of your nerves

Frightened but perhaps hopeful
 

Hello folks.

I am encouraged by your posts, but am still struggling with fear and anxiety.

I am experiencing severe and burning throat/neck pain along my clavical, trapezius/scm and under/around adams apple on that same side. Also, pain behind my head on that side and tingling/paresthesia in my left hand.

I hope I have not permanently damaged muscles or nerves in my throat somehow...a very frightful prospect to be sure. (and I know anxiety makes it worse.)

Any help, ideas, or encouragement is much appreciated, and I can honestly say I feel your pain. :)

Your symptoms sound like they could be stress related. Perhaps your doctor can prescribe something to help with your anxiety while you learn other methods to de-stress to the point that you no longer need the medication.

Some suggestions are exercise, muscle relaxation exercises, yoga, massage therapy, acupuncture, and prayer if you are religious. Find someone to talk to that you trust that may be able to help you see things differently and provide helpful advice and support.

Best wishes.....

Seems I have been talking to the wrong people . My doctor is telling me that lyrica is the best he can come up with , along with 60 mgs of morphine 3 times a day . I have been led to believe that lyrica is the best there is out there that helps neuropathy . But I have to tell ya , I have had neuropathy from the knee down to my toes for 5 years now . When I lay down the pain worsens by 100 fold . As long as I fall asleep in the first 10 mins I lay down the pain doesnt bother me until the meds wear off and I start feeling the pain . Oh yeah I take amitriptylene for sleep. I have not been seeing a neurologist so this may not be a good mix of drugs to help my pain . But occasionally I am pain free with just the feeling I am walking on baloons(pretty much all the time) . But the pain meds dont last as long as they are supposed to . So to get around it I am supposed to take 300 mgs of lyrica twice a day and 60 mgs of extended release morphine a day , well to make it last and be more efficient I take 150mg of lyrica 3 xs a day and 30 mg of morphine 3 xs a day . This often times leaves me in pain but still I get more relief that way . Grouchyness is a huge problem for me because my wife works alot to pay the bills and my kids are all 17 and older and just dont hang out with me much . So much of the time I am alone and in pain . I guess besides the pain loneliness is my biggest problem . I know I am depressed but just dont want back on the brain drugs , they really make it worse for me . Onlly one of those that worked made me hateful and mean and that was Wellbutrin . I have heard there is a surgery called nerve decompression that can cure neuropathy but my doctor doesnt know anything about it . I have read that only 200 doctors in the U.S. know the procedure and it takes a couple of cuts in various places along the spine neck and feet . Back to the meds , I am almost certain that gabbapintin is part of the cause of my neuropathy . Long story behind that but just wanted to see if anyone else might have the same conclusions . I honestly think the doctors treat the symptom and not the disease these days . Thanks for letting me vent a little and thank you listening folks . It does help to talk to people who understand this nonstop pain we live with .

Grateful for the conversation the understanding

Dhreg

Care to elaborate....?
 

"I am almost certain that gabbapintin is part of the cause of my neuropathy"

I just started taking Gabapentin yesterday and would be very interested in hearing why you think it caused your neuropathy?

Thanks....!

It is not from any medical experience it is just that since i started taking gabbapinton it just seemed that my PN became worse . I took it for about a year religiously like i was told by my pain management doctor. I really started having serious hate ons for the doctors since then . Its just that with all the meds I have taken in the last 5 years , the gabba was the only one that I saw any type of change for the worse with . Could really have been my own imagination I guess , but still ....

Hi! I'm new to this board and am finding it full of a great wealth of information and hope for me. I wish I had known you existed a year ago.

I've been diagnosed with idiopathic neuropathy in both feet. At times it goes up my legs and my left arm. I've been on Neurontin and Amitriptyline for six to eight months, which didn't seem to help that much, and now, just three days ago, I've switched to Lyrica (scared and not sure what to think about it yet :confused:), but I'm going to give it a shot. Also, I've just recently begun taking the WSN Nerve Support Formula (about six weeks ago), and I hope it helps! I do see where it has the B vitamins that have been spoken of here, so I feel better about that, but I'm wondering what other nutrients or minerals I may need? I don't know why I have neuropathy, so I don't know what else to try.

MrsD, if you're out there, would you mind giving me your opinion as to where I may begin? And I'd love to hear from anyone else who has a suggestion. I now have more hope after reading these posts than I ever imagined, so Thank You so much, everyone, for posting the good stuff. Awesome!

I look forward to getting to know the members and sharing thoughts, concerns, and help!

It would be ideal to have the B12 tested before you started that supplement, to see where you really are.

Another is to get tested for Vit D. This is showing low values for about 1/2 of the people in US. Low D increases pain from any chronic pain problem.

How is your blood sugar? Do you know your HbA1C?

Have you been tested for heavy metal poisoning/exposure?

Also I'd consider gluten intolerance since you have had this for some time. You can have blood tests to show if you have this problem:
http://jccglutenfree.googlepages.com/
This explains alot, and has a neuropathy section.

I have had my blood sugar checked, and the doctor said it's fine. He also said the B vits are fine to take, that it can't hurt me a bit. As to the others you mentioned, the Vit D and the heavy metal poisoning, I have no idea. I do know that I don't drink white milk, but occasionally drink chocolate. Thank you for posting the site re gluten free. I'll read up on that too!

Thanks, mrsD! :)

KK

Mrs D,

I've just read the B-12 thread. And thank you so much for posting so much vital information for those of us still trying to get that cocktail of vitamins as close to perfect as we can.

I would like to know your opinion of the WSN Nerve Support Formula, as far as what type and what the B vitamins are, if you don't mind. Here's a list: Thiamine, 103 mgs; Methyl B-12, 1000 mcgs; B2, 2 mgs; B6, 2 mgs; folic acid, 100 mcgs; Vit D3, 250 IU. I'm taking 9 of these pills a day currently, and they suggest that someone may take up to 12 per day, and then if that does't help, they'll be glad to consult us further. The price for these (120 ct) is right at 54.00 with shipping costs. If there's something I shouldn't be taking, then maybe I should be taking the vitamins separately??? What about any minerals? Any suggestions, or that I could ask my doctor about?

I'm due to go back to my doctor in six weeks to report how I'm
doing on Lyrica, so if there's anything else at all that you can think of that I may try, please let me know. I'm going to ask him to check my Vit C, D, & E. I think you said he could check those, right? I'm pretty sure you may know more than my doctor does! ;)

According to new information on D...milk is useless as a source.
It only has 100 IU of D2 in 8oz.

Here is a video to watch to illustrate the new medical research on the value to good D levels in the blood:

http://www.youtube.com/watch?v=TQ-qekFoi-o

:) I am glad that neuropathy can improve....i just hope that means will get better and progress a little faster than they are now. Still affect by it almost 3 years after an accident.

People are taking your news the wrong way
 

I'm not trying to be a party pooper but realistic and accurate. Neuropathies CAN NOT be cured. EMG's is not the only test that will prove you don't have nerve damage. Skin biopsies show you exactly how your nerve damage looks like and the if it's progessing. I'm happy you think you cured yourself if that's what worked for you to cope. We all find ways to cope from our neuropathies but giving people on this site the unaccurate truth is not fair.
I had a total of 6 EMGs. I think you took the neurologist comment to heart when he was probably joking.

Welcome to PN forum, Simpleboricua.

Many of us on this forum have been here for about 10 yrs or so.
This forum goes back to a previous one, that crashed, so we took up residence here. This thread, if I am not mistaken, does not say "cure". In fact, I don't ever recall seeing the word "cure" used here because we all realize there is no cure.
(spammers may throw that word out, however, and occasionally someone from a website comes here and uses it, but they don't last long).

IMO some kinds of PN can be dealt with, by the patient himself/herself. I think that is the thrust of this particular thread.
The hereditary forms of PN (CMT and amyloidosis) are the only ones so far that we don't have weapons for. Those with autoimmune issues, can benefit from IVIG or plasmapharesis, in some cases. All the rest of the RX drugs available do nothing to change progression of PN. They are palliative only. (pain relief).

But lifestyle changes, identification of deficient vitamins/minerals, dietary changes in the cases of gluten intolerance or other food intolerances, careful choice of footware, etc all can help people reduce pain and progression.
Treatment and management of pre-diabetes, diabetes, thyroid disease, drug causes, etc, all would require some medical support. Except for some of the aggressive neurologists like Dr. Latov and his colleagues, most neurologists fall short on treating PNers.

So this is why this forum exists. Please feel free to read here and learn the stories of our many members. Each one is rather unique.

tell me about the stickies
 

Im new here what is this stickies so I can read too

Lucy.... if you go back to the first page of PN forum... you will see that the first 4 posts at the top of the page, have the word "sticky" in the beginning.

This thread of responses, is the first sticky on that 4 item list.

Stickies do not move with time...they are stuck at the top so they can be referenced quickly and easily.

Something New?
 

Hi.
I am new here, just found you on Google.
My wife has had diabetes for about 7-8 years now. Over the last 2 1/2 years, I have been working and being her caregiver.
In Oct 09, they shut my plant down and layed all of us off.
This gave me alot of time to research all about her issues regarding diabetes.
I found this on the web while researching my wifes neuropathy symptoms.
*********************************
**
*********************************
I live in the foothills of the Sierra Mtns. in Calif.
These people have an office in Jackson, Ca which is only 20 minutes from me I am going to call them tomorrow (they are open Mon-Wed-Fri only...:confused:)
They say it is FDA, Medicare, and Insurance approved for treating this horrid disorder.
At this point, I will try whatever it takes to at least minimize her pain and discomfort.
Once my wife goes in to see them and they do whatever it is they do, I will post the results,**

stickies
 

what are the stickies

Welcome to Neurotalk JoJo....

Two posts above yours explain the stickies. You posted in one of them, right here.

Stickies remain at the top of the page, and do not move. So you know where to find them each time.

This forum has been here since Sept 06. So there are many many posts to read and learn from. It takes time but it is well worth it. At the top of the index of each page, is a "search" function. Type in your keyword.... like "chemo" and search for posts that show up in answer. You can search many terms this way. Shoes, drug names, etc. Searching can save you time and also the time of other members who have answered many questions over and over. So do practice using "search".

Has anyone tried high power laser therapy?
 

I have idiopathic small fiber peripheral neuropathy. All I've been offered was neurontin. I'm taking 1800 mg. a day and have been getting acupuncture which helps. The pain is really problematic and I'm having trouble with my balance and get very light headed. The neurontin gives me trouble with my short term memory so I'm looking for ways to minimize the need for drugs. I am wondering if anyone has tried high power laser therapy.

hi
I have copied your post onto the main part of the forum as it is more likely to get replies there than on this thread which is specifically for discussing improvement of PN

here is the link to your post so you can check for replies
http://neurotalk.psychcentral.com/thread121123.html
welcome :)

I do not see stickies.. Please help
 

I do not see stickies.. Please help

Hi Parinda
mrsD has explained well how to see the stickies

this thread IS one of the sticky ones too

Hello Parinda, and Welcome to NeuroTalk.

We have a new subforum listing here at this link with much of the information that has been on the stickies and elsewhere on this forum for the past 4 yrs.

This is the link.
http://neurotalk.psychcentral.com/forum119.html
Some of the subjects there are still evolving and being worked on, but do look there too for information.

Our members here have been posting for about 4 yrs now, so expect to settle in with some coffee/tea and start reading.

How much b12 should one take?
 

My father had a failed back surgery. Now he suffers from severe peripheral neuropathy. I got him to start taking brewer's yeast. But, there is no b12 in it. Please let me know.