We are Alone - Studies needed
 

While I appreciate the support and information provided on this forum by other sufferers, I think we are lacking the support of the medical community for our conditions.

I think that we who suffer are being denied the research needed. Every clinical trial I can find is for diabetic neuropathy. Doesnt anyone want to figure out what is causing the debilitating pain for the idiopathic?

I am beginning to become angry. i am looking for help in diagnosing/ curing / dealing with my condition only to find very few experts or even well informed medical professionals to help.

I am willing to partake in clinical trials to find a reason for this issue, but again, most focus on diabetes. I do not have diabetes, but my life has been sent into a whirlwind with pain that has unknown causes and which seems no medical professionals really want to focus on.

Perhaps if we join together, we could get some of the warranted attention needed so that our pain can be deminished and quality of life improved. Again, while we are a great support system for each other, we are not the answer to our illness which deserves investigation. I do not want to be disabled.

We are alone
 

just a side note.. we are all here for support which is great. however,what if we turned this into a forum for medical research. we all have peripheral neuropathy.. all with different symptoms, problems and issues.. why do we not somehow form together to compile all of our issues and present them to the medical community to get some attention. If we were cancer patients there would be hundreds of doctors to specialize in our illness. Why are we here taking solice in our pain with each other. We should reach out to the medical community and make them pay attention to our problems.There are so few doctors who specialize in this (unless diabetic related) which seems unfair. If anyone is interested in pursuing this further, please let me know.
i am willing to pursue. any assistance is appreciated.

I found the same thing. I also do not have diabetes.

I also found no real answers - anywhere.

I have my own theory regarding my own cause. But I am sure it does not apply to others.

1. I am tall (long way to the tip if my toes)
2. I have smoked my entire life (63 now)
3. I have big flat feet
4. I mostly ignored my feet for all these 63 years.

One of my daughters is a nurse. To her there is a connection to being tall - and there is a connection from smoking. She attends older people all week long day after day.

She says a noticeable portion of the people she tends (that have PN) are taller smokers.

I’ve had PN for five years. It came on while I was doing “leg lifts” (exercise) my toes started to cramp.

WHAM .... left foot (mostly toes) went PN .... three days later WHAM right foot.

Five years later - I still have never taken one single pain pill ..... I have no idea why I have not felt the need.

I have no idea if my feet are more or less “numb” - I have no idea if I have less or more pain than others.

I was tested enough to know ..... there is no apparent cause (idiopathic)

Even if the out sourcing of America had not have killed my income .... I STILL would not throw thousands of dollars down a hole just to hear ...... “do you want some pain pills”. (which I refused every time they were offered).

spkar ...... I am in decent shape for my age but ...... I don’t think there will be any real answers in my lifetime.

I have recently “bettered” all things to do with my feet/toes - with exercises (as per my hammertoe thread) for now I will be grateful for that.

Well--
 

--there certainly have been some attempts at research into unknown causes of neuropathy, especially through some of the larger neuropathy specialty centers such as Cornell-Weill, Hopkins, and recently Jack Miller in Chicago. (You can pull up their websites and often see what they've been up to, and what trials they may be planning.)

And, of course, there've been broader research efforts intot he nature of pain, involving SUbstance P, permanent tropic changes in neurofilaments that sustain pain circuits, etc.

Admittedly, these efforts have not brought as much hard knowledge as one would hope.

The problem in getting good research going out there often involves money. There's a lot of money in diabetes, since many, many people suffer from it (or will be suffering from it)--learning to control it with pharmaceuticals, mostly--so it's easier to get funding to pursue research in that area. (Many could just as easily control their diabetes, and probably their diabetic neuropathy symptoms, with lifestyle changes--diet, exercise--but that seems a lot harder for most than pill-popping.)

It's not that no good comes out of such research--often, what's found to be useful for relief or control of diabetic neuropathy may have applicability to other suffering from idiopathic syndromes, especially if they involve small, unmyelinated nerve fibers (as diabetic neuropathy typically does). Anodyne therapy, for example, originally developed for diabetics, is often useful for people with other small-fiber syndromes. Lipoic Acid has long been used by diabetics, but there's been some research that indicates it can help others, as well. This is probably due to the mechanisms of damage, and nerve repair, being analogous.

Coming at this from another side, immune modulating therapies, such as IVIg and plasmaphoresis, were not originally developed for neuropathy per se, but of course have been applied to suspected autoimmune neuropathies, and some research is going on in this realm.

The problem may well be that when something is "idopathic", science does not yet know just how to frame the research questions--it's unknown what the mechanism is, so it's hard to know what to try to test.

Now, we have discussed here in the past the problem neuropathy in general has in getting publicity and advocacy (I've written about this extensively in a number of spots on the web). Part of this is that neuropathy is often thought of as secondary to another condition (such as diabetes) that attracts the publicity. Part of this is due to a lack of a celebrity spokesperson--about all we've had lately is Mother Dolores Hart, who is a nice enough person but does not have the name recognition of Michael J. Fox for Parkinson's, or Annette Funicello/Montell Williams/Terri Garr for MS. (There have been a lot of famous neuropathy sufferers--Andy Williams, Mary Tyler Moore, Johnny Cash, Bobby Short, Julia Child--but they tend not to advocate around it; some, like Ms. Moore, advocate for the primary condition.) And, part of this--and I'm being really blunt about this--our natural advocacy organizations, such as the Neuropathy Association, have not had the funding, or often the visionary management, to get the condition the publicity it deserves. And that is a shame, considering more people suffer from neuropathy than Myasthenia Gravis, ALS, and MS combined.

The people on this board have actually been among the most vocal and advocative--especially as regards the growing knowledge of celiac/gluten-related neuropathy, which has become a much better known entity this last decade. All we can do is keep on talking, writing, explaining, pushing, pestering the media and the medical establishment, etc. Without that financial incentive, though, things are very tough.

Sometimes the research for one type of neuropathy can
flow over into others.

Lidoderm patches are an example. But this is just symptom relief for most.

I did get a 90% resolution to terrible nerve pain in my right thigh by using these patches. I didn't expect that.
I guess in my case the nerve was just "overfiring" for no reason continuing from the surgical damage, and when numbed for 14 days in a row, it just stopped.

Sometimes I wonder if some neuropathies are just REACTIONS to a previous assault that is now over?

My response to strong magnet therapy also gives results like that, but less dramatically.

I just finished a month of night time magnets on my left groin injury which was
getting worse again. It appears to have stopped for now. Its been 3 yrs now, with that terrible tendon rip!

You have my vote and you echo how I feel and feel in general about that lack of support.

I agree its good to talk to others but in the end talk gets us nowhere and Im tired of this too *edit*

This is nothing personal to any one here as folk like Mrs D have been fantastic , but they can only do so much i.e. advise with the same old opitions .

The reason cancer gets so much focus ( yes it infuriates me too - given some of its related to smoking and other things self provoked) is because its seen as terminal and therefore a priority .

I can tell you Im only 32 but there many day I almost wish i did have cancer Im so tired of this and the fact Im not only left with multiple problems which in themselves were caused by doctors to start with , but also confined to live them out in misery knowing what to expect tomorrow and every day after that the rest of my life.


I dont want to sound bitter and angry but I am , I know as I knew 10 years ago the likely outcome of these problems and nothings changed.

Are you saying that MS etc get funding because a celebrity happens to endorse it ?

If you know that , they must know that too i.e. theres far higher numbers with this , so from a business point of view ( which is basically all this boils doen too ) why wouldnt they focus on Neuropathy when theres a bigger market ?

not meaning to add gasoline to this fire but there are also treatments and devices such as orthotics and special shoes that will only be paid for by medicare and insurance companies who follow medicare guidelines if your peripheral neuropathy is a result of diabetes. So two people can have the same medical condition but one gets help and the other doesnt depending on the cause.

Idiopathic simply means they can not find a reason.

There are probably hundreds of diseases that encompass neuropathy....hence, no research on cases that are 'idiopathic'. The effort goes into trying to find if you have one of these hundreds of diseases....that takes years, a lot of money, and a physician willing to go the distance. (most are not).

Idiopathic neuropathy started a search for me that has ended up with no real reason, but, with the knowledge that my immune system is messed up. I have a diagnosis of Sjogren's without the blood work to match, but with a salivary gland biopsy so full of lymphocytes it would not even be scored.

I had Lyme disease, caught in the first month, with an EM rash.

My T cells are messed up.

I have all kinds of -opathies.

I just have to research more and wait for each new symptom to come along....and hope my IVIG works. So far, it has done away with quite a few neuro symptoms, however, I have a boat load of other symptoms to cause misery.

I ,too, get frustrated with the lack of research on neuropathy that is not diabetic. You may find that sites that cover dysautonomia provide some info on PN.

However, there is not likely to be a great deal of research on Idiopathic PN, because for many, it is a symptom of a disease, perhaps one yet not diagnosed or discovered.

Idiopathy
 

There is so much here which sounds like me and really reinforces my belief that there has to be more to this than just idiopathic neuropathy and finding the right pain meds to live on. I am not ready to accept that. On top of the neuropathy i also have a host of autoimmune issues, all of which could be the marker for an alternate disease, but not enough blood work for confirmation. Unfortunately I have passed on many of these immune issues to my kids and pray that they do not progress to the point where i currently am.

Does anyone know of a younger celebrity or famous figure who suffers from neuropathy? (not diabetic). I would love to shout out to them and anyone else who might listen.

Columbia and Weill Cornell do not accept my insurance. Unless I pay out of pocket, which i can not afford, I can see one of these doctors only if i qualify for an ongoing clinical trial (every one right now is for diabetic neuropathy) . I check www.clinicaltrials.gov daily to see if there are any studies being done in this country related to my issues.

I just find it hard to believe that this is it..Deal with the pain and slowly deteriorate. I want to be there for my kids for many years as a functioning person.

I,like tepol am frustrated, but i will continue to search.

Frustration comes with the definition of
 

IDEOPATHIC plain and simple. 'Of unknown cause'.

That folks who have diabetic neuropathies are vocal and agressive about seeking and getting treatments is something that WE ultimately benefit from. Also, we benefit from those who have 'toxic' neuropathies due to chemotherapies...those folks too are outspoken.
Now, it just takes educating the physicians of this world to WAKE UP and hear our plights. Not to mention just plain people who have no clue.
Here is a web site about how do do advocacy on our own...don't underestimate that it 'seems' like a California only site? Their board of directors and advisors are national AND their director has been a medical lobbyist UNTIL he came down with Multifocal Motor Neuropathy.
http://www.neuropathyaction.org/links/index.htm
Look under the 'Advocacy is Empowerment' tab at the top. It's a complete roadmap.
It is an approved 'foundation' according to many foundation giving rating organizations. Other 'neuropathy foundations' are NOT and are reported as such.
I am always frustrated about comments that we need a 'star'! HEY! WE ARE THE STARS! and I bet, that we are FAR more eloquent than any 'star' about the pain we go through and how hard it is to get any diagnosis and treatment. WE don't need scripts, after all.
We can and should constantly do 'advocacy' with our insurance companies, our local governments and so on up those food chains to get them to understand that we are kind of like the 'stray cats' of the neuropathy research world. But, don't forget, 10-15 years ago, women w/breast cancer felt that way too. They are making INROADS big-time now.
Thing is, rite now, we 'have' an organization that is supposed to 'represent' US? Take a look, a hard look at what they do....call them and ASK for information-you mite have to leave a message and get a call back in a week from some harried volunteer[bless them]. Obviously you pushed one of my 'buttons'? But, I used to be a grants administrator .. giving $$'s to non-profits and some of these orgs are up to snuff? Others are not. Guess which is which? DUH!
You aren't totally alone, you are HERE and we can try and help as best as one can, long-distance and all. Don't forget, that PN is competing with LOTS of other serious and often far more nasty illnesses. Even tho diabetes and non-diabetic PN's are becoming leading medical issues in the US! Only ones working on things are the drug companies-profit is all motivating after all.
Hugs and hope in the interim! - j

thanks... keep it coming
 

thanks for the link to this site.. i will check it out.. and you are 100% correct.. WE are the stars!!!.. keep them coming.. WE have to make a difference.. It is very difficult for me to see posts on here from people who are just trying to deal with symptoms.. I know the pain is real.. i know how bad it can be.. i am on drugs to control the pain which will definitely decrease my life span and quality. i am not prepared to accept that. WE all need to join together to make a difference. I happen to be watching Armeggedon right now.. people come together to make the difference... and they do.. lets see what we can do together.

Goodness,
I am sooooo tired of hearing about diabetic neuropathy and everyone on neuropathy boards trying to tell you that you have diabetes when your Dr.'s have tested you for it over 10 times and you know for a fact that you are not diabetic.

I am an otherwise HEALTHY 22 year old female. I exercised up until the point that my neuropathy prevented me from doing running on the treadmill.

I'm not vitamin defecient. So don't try to shove B12 defeciency at me either.

Those and thyroid.. :mad::mad::mad:

Seriously.

I don't know how many times they need to test the same thing over again to know that its NORMAL!

Looking for Any Contact Links
 

i do not have diabetes - not B12 deficient. i used to run on a regular basis.. until i could not walk. you are exactly what i mean...there HAS to be a reason.. let us not just accept our doctors diagnosis that this is it and deal with it and the pain. Join me. I will spend my day tomorrow preparing a letter to anyone and everyone I can that will listen. I have a very good talent for composing a compelling statement. i am asking everyone to send me every contact they have who may have some influence in helping us. web sites... email adresses.. whatever.. Please send it to me.. I will add your online names as support if you like (no names, or emails) just the influence from members here.

just an example - one holiday i ordered a book from barnes and noble for my son. he was a tv/film major in college. it was called 1000 movies you must see before you die.. i ordered the book online. it was delivered damaged. i called b&n only to be told that i had to return the damaged book, pay for the return, and in order to receive a new one before the holiday, pay for a second. I was ******. I let it go until the day before. As i was wrapping this damaged book, i knew it was wrong. i composed a letter and researched email addresses for executives at barnes and noble. I found many.. I blasted my complaint to every one. Needless to say, on christmas eve, barnes and noble personally delivered to my home a perfect book. not that this is the same, but hopefully shows my determination.

so send me your contacts.. web sites..emails.. i will do my best to argue for more research on snf and less focus on pain meds.. there must be an underlying cause which has not yet manifested.

Let US be the STARS and fight to be heard.

oh, that medical model....
 

That medical model is sure powerful.

This subject continues for many people who fall thru the cracks with modern medicine.

I've been watching Discovery Health once a week. They have two series called Mystery Diagnosis, and Dr. G.

Yesterday, they had a poor guy on who was bleeding heavily from the rectum whose doctor told him for 2 YEARS that he had hemorrhoids...when his insurance changed he went to a new
doctor who found COLON CANCER!
There are other more obscure cases with more rare conditions that go YEARS before diagnosis.

With my thyroid, my serum blood work was not seriously abnormal. I went 15 yrs with pain and fatigue only to find that my thyroid gland was malfunctioning anyway. A radio isotope scan showed what blood work did not, and I finally got the treatment I needed. It took about a year for my feet to wake up and my carpal tunnel to recede. Finally when my gland swelled up internally and pressed on the laryngeal nerve, did the endo order the more expensive test. Even with the abnormal scan and goiter, he made me wait 6mos to see if it would resolve on its own, which it did not. When I took these tests back to my internist, she comments..." I always thought you were hypo, but unless the tests show something, I won't treat!" Lovely! :mad:

We have very high tech medicine today. BUT many people do not get better treatment because of that.

The new information on mercury content in our high fructose corn syrup foods is alarming. TV commercials are now promoting this nasty sugar, saying "you know what they say about it?"..and the other actor says, "yeah, what?" and goes on to tell how normal it is.... all the while it has 5 times the mercury in it than fish!

Drinking water from a water bottle? Say hello to Bisphenol A which is poisoning babies and children like the mercury HFCS in juices, which may be setting them up for who knows what disorders as they get older?

I wonder how many people have had Cipro or Levaquin for an upper respiratory infection and turned up later with neuropathy symptoms and never make that connection?

Get a flu shot this year? Don't think these are innocuous either!

People with neuropathy do get angry. People with chronic anything get discouraged, depressed etc.
When PN starts, in younger people, like mine did so long ago, doctors don't really think it is serious. I was told, "what do you expect when you stand on your feet for 13 hrs a day at a high stress job?"

We live complicated lives. We get exposed to many nasty substances that are hidden in our food/water. We catch viruses and infections that do subtle things to our immune systems.
We paint our homes, strip antique furniture, buy a new home with formaldhyde fumes and carpet outgassing, use teflon cookware ( fumes from which will kill pet birds), take drugs for various other problems, etc etc and think, none of this will make us sick.

The bottom line is that our bodies CAN heal if given the opportunity. People with PN really have to be detectives.
This requires homework, and patience.
One patient may have a drug reaction, another may have arsenic in his well water undetected, another a diet deficient in Omega-3s and high in HFCS, another an autoimmune issue triggered by an infection or vaccine (GBS).. how will all of these respond to one cure? Is there one cure for them all?

I don't think so. Some may be demyelinating. Some may have mitochondrial damage within the cell wall itself. Some may have toxicity at the dendrite endings. Some may have combined effects, some at the spinal cord level. Some may have only central pain issues after an initial trigger (Fibro) in the brain.
PN is really complicated. And doctors just do NOT spend that time with you. They may think it will be self limiting, because some do heal up.

Back to Mystery Diagnosis on TV. Last week was a young man with a GI food gastroenteritis. He was sick for many days and finally went to the ER...and they did tests and gave treatment and support for it. He lost 30 lbs in a very short time. While he was there, he started to develop a neuropathy in his legs. All the doctors and nurses ignored it. When he became paralyzed finally, someone sent for a neurologist, who then diagnosed GBS and put him on IVIG. Explaining to the camera.. Campylobacter food poisoning is known to cause GBS!
This guy ate chicken that was contaminated and poorly cooked at a friend's house.
His PN didn't show up right away either! So then I wonder how many others get milder forms of this food borne illness and go on to develop a PN? Very complicated. And sadly not all doctors know everything. That is why we all need to keep up with what is going on in medicine, not just PN, because illnesses spill over and cause other things as well.
(of course they didn't say what drugs they used to treat the gastroenteritis...if Flagyl and/or Cipro...then the drugs could have caused the PN).

I was not happy with either of my doctors. I stopped going to the endo. My internist continues with me. And I continue to be my own doctor in some ways as well.

And with all our high tech medicine, we still do not have a cure for cancer or some other common things. We have resistant strains now of many dangerous bacteria, which are very frightening (resistant clostridia and MRSa). Medicine isn't doing too well with those either.:(

I was Dx'd with PN, years after my symptoms first showed.
I had always been a bar & cabaret performer, and actor in community theater
After over 5 years of foot pain and mis-diagnosed by a brainless & stubborn HMO PCP, I started drinking alcohol (at about age 40, to self medicate for my pain. I had not been a drinker for most of my younger adult, and mid life times, but performing in bars, cabarets & such, I had not been a tea-toatler, either.
When I was finally Dx'd, the neuro looked no farther than my recent history and deduced 'alcoholic neuropathy' - a long standing Dx for PN, and an easy one to dismiss my cause. I know that the drinking made my PN more severe, but I also know, now - that the PN occurred waaay before but the AN stays on my records as cause. Look no farther.
I'm sure that it was a different cause, initially - but at least I finally got treament for any type of PN, instead of
'you're on your feet for so many hours and are in a stressful home life , stressful occupation & as a performer, anxiety & stress are a given - sure you are fatigued and your feet hurt - Epsom salts..... soak 'em".
Bah !! Phooey !! Blaaaatt!!.............. WRONG !

Hey --

Mystery Diagnosis: Best show on TV. I've become addicted...

agreed agreed

Hahaha, I actually thought about calling mistery diagnosis up and being like.. sooo.. my Dr.'s can't figure out what's wrong with me, can I be on your show?

Unfortunaly, that show ends with the people actually finding out what they had. So I don't qualify. :(

My mom watches that show. It just takes that one doctor who will look outside of the box and give you the right dx. I have seen so many docs in so many states with so many diagnostic tests I have no idea any more. I am young when I got PN I was 28 and rsd in legs/ear/eyes. I also have other smaller conditions like a smokers cough but I never smoked that are basically way before my time. Like if I hear you are too young for it and then it happens I will scream.There is no reason to have developed these conditions though I had a past of anorexia but no doctor sees a connection and I agree getting the word out is key. The problem with show like the one stated or Dr Oz for Oprah is many of us are not quick fixes so to speak and that makes a better story for the doctors and getting more people to come to them.
In my eyes I think doctors need to look outside of the box but also try to connect things instead of shove patients off or just look what is in front of them. I always go with my binder of records and written reports but I often wonder if I asked them to tell me what they thought before if a new approach or thought would come into play rather then just going along with what others have said. I keep reminding myself it just takes that one doctor or one treatment that helps me hold to hope

Mystery diagnosis IS all about the Diagnosis!
 

not in diagnosing anyone! That process in the meat grinder is US and up to US!
One point the show does make is that somehow....the less common medical issues aren't in any general practicioner's repertoire. I liken it to a piano bar player doing only Billy Joel but is incapable of doing Elton John or anything more complex or contemporary.
I was lucky in that I suspected my neuro #1 didn't have a clue nor cared. I am grateful I found neuro #2 and then A big cheese neuro [#3] to get all the tests needed done and treatments on the road. For so many of the folks featured on the show? Some suffer 20-30 years before someone thinks either outside some boxes or looks at 'other' boxes at all to find the real issues.
Wether it is training deficiencies in the basics of medical indoctrinization or a lack of overall 'educating' at those recertification conferences that they seem to go to [and only play golf-I hate golf! Sorry golf lovers] omits the expansion of minds into other areas...It's just that the 'system' has failed us, and miserably.
Neuro issues diagnostics IS a process of elimination! Then it's try and treat with what is available. Do remember that most PN meds are prescribed 'off-label'! Honestly it's all hit or miss and we are the ones that have to experiment.
WE are whole persons who HURT! And that to me is the best way to present your cases. If any physician questions YOUR questions? Or worse, questions that YOU question THEM? Well- Time to get some 'second opinions' if you can afford it! It can and has saved lives. As many here will attest to that fact.
Hugs and hope to all! :hug:'s - j

Diagnosis
 

I started this thread with little hope. I just felt there needed to be more for people like us than is currently out there. I also happened to change insurance plans in January and had to find a new primary MD as my old one did not accept the new plan. I had my physical with my new internist this week. I thought that this doctor would look at me and all my problems and say - oh no..i am getting involved with a woman with all these problems. Thankfully I was SOOOO wrong. This doctor listened to all my conditions, looked thru my records, and spent over an hour talking to me. She believes as i always have, that there is an answer..a root to the symptoms. She promised to be my ally and put together a team of specialists who would "work together" and talk to each other about my issues, instead of each specialist treating their own symptoms. I am excited yet nervous. I am glad to have someone supporting me and coordinating my treatment.. She has run a ton of her own bloodwork and is setting up a plan for me with specialists who will work together to find the common cause and think outside the box. ithink that is the answer to my issues.. there has to be a common thread.. i know i will have to see a new neurologist, rheumetologist, endocrinologist and more, but at least i know feel i will not be alone. I have new hope that i will find the real underlying cause to my neuropathy and excited to have a new md to stand with me. it means coming off the steroids that keep me out of pain, but something i am glad to do if we can find more answers.. those steroids will only kill me anyway.

so looking forward with trepidation to more answers... it may be the md who makes the difference.

Wow! That's great dude! Wish I had an insurance policy that would do all that. Glad to see that there is a doctor out there who is willing to go the extra mile to try and find a cause. Wish there were more of them.

Jay

Testing
 

still pretty scary..the pain i have makes no sense. i am sure most of the mds will be out of my pocket... but again,just not ready to give up

Neuropathy etc.
 

Hi everyone,

Well, what to say - it has been said already :wink:

Here I had put some really cool links, but I am too new to post links, sorry :(

In December 2006 I wrote this:

Well, reading all my tests and searching the internet and getting retested for Thyroid disease including antibodies - I finally got the diagnose Hastimoto's Disease and B12 and D vitamin deficiency. My neuropathy is much much better when properly medicated for thyroid problems, but I have persisting neuropathy problems in hands and feet including Carpal Tunnel.

A new little something has occured now, namely Vulvodynia - a new running around to doctors who cannot do anything about it. No known treatment and a diagnosis which just means "pain in the vulva". I already knew that but what is to be done with it???. I have been told that I have a lot more nerve endings and that it probably has to do with my already existing neuropathy, but it has gotten worse in stead of better on my thyroid meds. I have tried all things suggested on the internet for this, but if any of you have any clues, I would be grateful!

Life is wonderful - a little more knowledge to doctors and researchers would make life even more wonderful. Treatment and good wishes to all!!!! :grouphug:

Vulvodynia
 

I have posted a new thread under "Women's Health" regarding "Vulvodynia - any help ?" if anyone wish to give me advice about Vulvodynia, which I would very much appreciate!!

I look forward to hearing from you all!

Now I think I can post the links which I meant to post earlier in this thread:

Evaluation of Peripheral Neuropathy
http://www.aafp.org/afp/980215ap/poncelet.html

Why Doesn't My Doctor Know This?
http://www.immunesupport.com/library...M&B1=EM041107C

NEUROMUSCULAR DISORDERS & ENDOCRINE DISEASE
http://neuromuscular.wustl.edu/msys/mend.htm

This one with reservation - I have not tried it out:
http://concernrelated.mitamins.com/N...esthesias.html

:grouphug: