[aeb105]

Just joined the Neuropathy Association not too long ago.

Just wondering if any of you guys/gals are members and have found this organization beneficial in any respect?

[stagger]

Joined a few years back, I don't visit the forum very often, they produce a good newsletter IMO

[malawigirl08]

I joined but didnt find it very helpful - much prefer here, this feels like home and more people use and answer.

[aeb105]

Originally Posted by malawigirl08

I joined but didnt find it very helpful - much prefer here, this feels like home and more people use and answer.

I feel the same way. *edit*

From what I see, there is very little info on treatment there or where things are going in terms of research. From what I have seen, the research are little mini studies they are doing and nothing of great significance.

This forum is an excellent repository of information with very knowledgeable and proactive people.

When I search the net, most treatments are still geared towards pushing Pharma drugs which is fine if the pain can't be treated otherwise, but bad if it makes you worse.

All I remember was when they gave me the diagnosis, of SFN at the Cleveland Clinic, they said they didn't know much about it and they could either give me Lyrica or Cymbalta.

These drugs made my symptoms worse as I was triggering all the time.
Until I started using supplements, I didn't have much releif.


*edit*
Thanks.

[glenntaj]

--it does have, on its website, some good papers/documents about different sorts of neuropathy, and it does attempt to publicize the problem of neuropathy from time to time, though I, for one, have publicly criticized it for not doing more, and not getting celebrities with neuropathy (and there have been more than many people think) to speak about it and thus attract more attention to a syndrome that has more sufferers than multiple sclerosis, Parkinson's and myasthenia gravis combined. (Notice all three of those conditions are far more publicized--it may be because neuropathy is often considered to be a secondary effect of some other condition such as diabetes, but it still deserves far more consideration in its own right, especially considering the number of idiopathic cases.)

I can say that the Association seems rather understaffed and underfunded for a condition that affects so many people.

The message board there can occassionally be useful--I post there--but it is not well-organized or moderated, making it difficult to use. This board is easier to navigate and as a result has much easier to find information about the condition.

[mrsD]

Well, I am not impressed with them. I have seen them on Today TV program...they could not even get a few minutes segment to explain it ..all they did was hold up a T-shirt, and say "join".

To me that was the most lame thing ever. I suspect... drum roll please as I get my paranoid hat on.... that Big Pharma is behind it like it is in another area, ADHD, CHADD. CHADD gets about 50% of its funding from Big Pharma. CHADD therefore, promotes drugs for children mostly. If Big Pharma is NOT donating to this Assoc. then maybe NO ONE is, and they have no money. Well, I have for a DECADE donated my time for FREE to this forum and its predecessor board, to help people advocate for themselves. (and I have met many wonderful people along the way too!)

I have something else to add: I firmly believe each patient should be his/her own advocate. Waiting and relying on an "Association" to do something for you these days, will result in a LONG WAIT.

There is a substantial amount of information on the net from reliable medical opinions, to allow most people to form their own path of helping themselves. Special interest groups, whether it is Big Pharma which wants to guard its major money making drugs jealously, or any other group ( some doctors who want your exclusive business) can be obstructing in the end to your finding some relief from your pain and stress. Some of the "treatments" offered today are financially out the of reach of many, as well, and may be toxic in the end.

I found much information on PN, myself, and share it freely here.
People reading can take it or leave it...but I think they are capable for the most part in making those decisions.

I believe PN is an environmental disease (apart from the metabolic causes--but even diabetes is somewhat environmental because of the poor dietary choices we have in our food supply). That means toxins and drugs (given by doctors) can create your PN. CNN is running a show about this now by S. Gupta, who claims that studies are showing the average American consumes pesticides regularly.
More here: this is just one alarming example:
http://ac360.blogs.cnn.com/2010/06/0...ue-group-says/

[aeb105]

Originally Posted by mrsD

Well, I am not impressed with them. I have seen them on Today TV program...they could not even get a few minutes segment to explain it ..all they did was hold up a T-shirt, and say "join".

To me that was the most lame thing ever. I suspect... drum roll please as I get my paranoid hat on.... that Big Pharma is behind it like it is in another area, ADHD, CHADD. CHADD gets about 50% of its funding from Big Pharma. CHADD therefore, promotes drugs for children mostly. If Big Pharma is NOT donating to this Assoc. then maybe NO ONE is, and they have no money. Well, I have for a DECADE donated my time for FREE to this forum and its predecessor board, to help people advocate for themselves. (and I have met many wonderful people along the way too!)

I have something else to add: I firmly believe each patient should be his/her own advocate. Waiting and relying on an "Association" to do something for you these days, will result in a LONG WAIT.

There is a substantial amount of information on the net from reliable medical opinions, to allow most people to form their own path of helping themselves. Special interest groups, whether it is Big Pharma which wants to guard its major money making drugs jealously, or any other group ( some doctors who want your exclusive business) can be obstructing in the end to your finding some relief from your pain and stress. Some of the "treatments" offered today are financially out the of reach of many, as well, and may be toxic in the end.

I found much information on PN, myself, and share it freely here.
People reading can take it or leave it...but I think they are capable for the most part in making those decisions.

I believe PN is an environmental disease (apart from the metabolic causes--but even diabetes is somewhat environmental because of the poor dietary choices we have in our food supply). That means toxins and drugs (given by doctors) can create your PN. CNN is running a show about this now by S. Gupta, who claims that studies are showing the average American consumes pesticides regularly.
More here: this is just one alarming example:
http://ac360.blogs.cnn.com/2010/06/0...ue-group-says/

Yeah I agree with the environmental toxin portion(going to try OSR #1 now). I am almost convinced that the pharms I took(Prevacid, Cipro) along with some physical events caused mine. Our Food Industry definitely promotes Diabetes, Heart Disease and many other 20-21st century diseases. Then you when your sick, you have Big Pharma waiting to prescribe a pill(which usually leads to 6 other pills.)

As for the Neuropathy Association, I would almost like to write them a letter and see what they might be able to do to fix some of these things. I too thought that maybe they were owned or majorly contributed to by Big Pharma and that is why things are not really going anywhere. It seems like it is more profitable in the end for them to treat our symptoms than to treat our problems. It is disgusting when I see or hear people's problems getting worse because of this prolongued symptom treatment.

In Europe and Japan for over 20 years they have been halting and even reversing certain neuropathies(mainly diabetic, alcoholic) to a degree with Benfotiamine and Alpha Lipoic Acid and other modalities. But our doctors won't tell us this. Why? Because they only read Pharma research journals which basically drive their decisions towards bandaid symptom treatment(pain meds) moneymakers instead of disease resolution.

Until someone calls attention to this problem, everything will probably stay the same. I agree we alone and are our best advocate but without a true organizing force detached from Pharma's influence, we are stuck! I would like to change this. I have some ideas but would like anyone's opinions as well.

[mrsD]

There is a reason for the Japanese point of view.

Over 30 yrs ago a commonly used drug (Vioform) was discovered to be very neurotoxic. It remained on the shelves in Japan longer than here. It was about the early 70's when it was withdrawn in US. I recall this vividly because my MIL used it for traveler's diarrhea.

The damage that Vioform (now called clioquinol) caused was death, disability and blindness, because this drug depletes B12.
You can read more here: The disorder was called SMON.
http://books.google.com/books?id=JP8...opathy&f=false

It remains controversial still, but I do think the drug caused most of the damage.

Japan has since been using more creative solutions, as a result for many things. The studies using extremely high doses of B12 for MS, came from Japan.

In this country, Big Pharma controls the drug industry. This began in earnest in the early 90's. Zantac and Prozac were the major blockbusters, back then making millions a day for Big Pharma and now the emphasis in this country has shifted to the mega bucks (and "me-too" duplications of similar products). Eli Lilly which had a huge list of drugs it sold for decades...called ethical proprietaries, cut out the whole line back then.(seeing the writing on the wall with the FDA requiring new drug applications more and more for older products). But I recall them well.

[kpRN]

Originally Posted by aeb105

I feel the same way. *edit*

From what I see, there is very little info on treatment there or where things are going in terms of research. From what I have seen, the research are little mini studies they are doing and nothing of great significance.

This forum is an excellent repository of information with very knowledgeable and proactive people.

When I search the net, most treatments are still geared towards pushing Pharma drugs which is fine if the pain can't be treated otherwise, but bad if it makes you worse.

All I remember was when they gave me the diagnosis, of SFN at the Cleveland Clinic, they said they didn't know much about it and they could either give me Lyrica or Cymbalta.

These drugs made my symptoms worse as I was triggering all the time.
Until I started using supplements, I didn't have much releif.


*edit*
Thanks.

I have an appointment at Cleveland Clinic on 6/14. Do you remember who you saw there? I am not hearing good things about CC and wonder if I should cancel my appointment. I am seeing Dr. Shook. Greatly appreciate any help you can give. I did try Cymbalta but we are in the process of weaning off after 2 months. Made me have tremors and constipation (bad). Glad you are finding some relief with the supplements.

[aeb105]

Originally Posted by mrsD

There is a reason for the Japanese point of view.

Over 30 yrs ago a commonly used drug (Vioform) was discovered to be very neurotoxic. It remained on the shelves in Japan longer than here. It was about the early 70's when it was withdrawn in US. I recall this vividly because my MIL used it for traveler's diarrhea.

The damage that Vioform (now called clioquinol) caused was death, disability and blindness, because this drug depletes B12.
You can read more here: The disorder was called SMON.
http://books.google.com/books?id=JP8...opathy&f=false

It remains controversial still, but I do think the drug caused most of the damage.

Japan has since been using more creative solutions, as a result for many things. The studies using extremely high doses of B12 for MS, came from Japan.

In this country, Big Pharma controls the drug industry. This began in earnest in the early 90's. Zantac and Prozac were the major blockbusters, back then making millions a day for Big Pharma and now the emphasis in this country has shifted to the mega bucks (and "me-too" duplications of similar products). Eli Lilly which had a huge list of drugs it sold for decades...called ethical proprietaries, cut out the whole line back then.(seeing the writing on the wall with the FDA requiring new drug applications more and more for older products). But I recall them well.

Very interesting Mrs.D. You always have the best info. I had never read that.

Are you thinking that maybe alot of these neuro diseaese/disorders stem from similar pharms as well like Prevacid and Cipro?

One deduction I have made from these "situations" is that if you keep people ignorant, you ensure your market and can keep (slow-bleed) your customers.