NeuroTalk Support Groups - We are Alone

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- - We are Alone - Studies needed (https://www.neurotalk.org/peripheral-neuropathy/78474-studies.html)

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.

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.

--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!

Quote:

Originally Posted by spkar0517 (Post 469080)

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.

Quote:

Originally Posted by glenntaj (Post 469148)

--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, sucah 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.

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.

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.