Neuropathy Association
 

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?

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

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.

The Neuropathy Association has its uses--
 

--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.

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.

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.

Question about Cleveland Clinic
 

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.

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.

MRSD I soooo agree with this being an environmental disease. I just ate a piece of toast with 30 ingredients!

Plastics....pesticides.....flame retardants....teflon.....

Boy did we ever cr@p in our own nest!

Now how do we teach ourselves to live without this stuff? It is hard to believe I lived in the pre-plastic world for the early part of my life. How did we do it? Can it be done again??:confused:

Cyclops-

I saw Dr. Morton. And all my tests passed I think except the QSART(will have to recheck) and the nerve sample.

They would be good for getting your diagnosis, but when you find out, I would come back here and post and then get help. I am a firm beleiver that these drugs will only make your problems worse unless you need them for excruciating disc pain or similar. Mrs. D and the others here are your best doctors.

Sorry Kprn I got your handle mixed with Cycleclops.

About the environmental toxins, notwithstanding the brilliant acts of corporations like BP and Monsanto is the Food Industry which is doing its share. If anyone ever gets the chance and wants to see how all our food is created and what's in it, I recommend the movie "Food, Inc". It essentially shows how our food supply is controlled by 4 Big Companies that basically dictate what goes in our food. And they are wreaking havoc with our health.

High Fructose Corn Syrup, MSG, Genetically Modified Soybean and corn oil, antibiotics, growth hormone, pesticides, irradiated meat and hydrogenated trans fat are the elements in regular non-organic food that is adding to our toxic load. These are neurotoxic, carcinogenic, free-radical creating substances that you will find in a lot of our food. In fact after watching that movie I made some big changes.

I think our food here in the U.S. is a justification in and of itself of the crucial need for antioxidant supplementation and the need for migration to organic(not always easy). Then again if our FDA did its job and really regulated things(hard to do when they are run by these companies; can we say corrupt -YES) maybe we wouldn't have to.

Yes, I do think your drugs may have contributed. I am going to make the next post on the SubForum, for fluoroquinolone antibiotics.. probably this week or weekend.
http://neurotalk.psychcentral.com/thread122889.html
That thread will also have Statins for lowering cholesterol.
But the subject is so large, I've been reviewing my links for the fluoroquinolone post that will be coming soon.

Long term Prevacid may block B12 absorption like other acid lowering drugs. The Cipro is more neurotoxic...and affects the nerves in a different way.

The subject "fluoroquinolone" or "Cipro" or "Levaquin" as search keywords here will bring up many many posts! So take a look that way too.

Yeah I was also on Levaquin for 30 days 2.5 years ago. I had a spyder bite 4 years ago that they put me on Cipro for.

You are right Mrs D... no treatment comes without consequences!
 

And, it is truly sad that most here have NOT memorized the bad s/e's possible on their meds lists! It's hard work to take meds and supplements so they don't cancel each other out..... one this hour? Another the next? It can become for many an all DAY EXPERIENCE! Now, I take only WHAT I NEED! No more? No less.
As for anti-biotics? They do have their place and their time.. the problem is that so many practicing docs aren't keeping up to date about the s/e's that can happen from long term anti-b's. I'm definitely a victim of this, I believe, but there's no 'clinical proof' of the cause/effect aspects. Ergo I'm a sunk boat from that perspective. BUT IT DID cause things to 'happen' to me causing a big downhill neuropathy spiral down almost thru the drain.
Being 'treated for one thing'? Can help that one thing, but it could create havoc on the rest of your systems! We are NOT automobiles, we are very complex animals with inter-relations among our various systems that are truly marvelous and amazing. But mess up one? You get problems. We w/neuropathies have had our 'systems' thrown out of sync. Thus we must be super careful about anything we eat, drink, take in, etc. to the point of almost being paralysed at times about what to do!
There are many here with a huge pool of knowledge! About their experiences and about how they've dealt with them! USE and read this knowledge and get smarter!
I also agree w/Mrs D about BEING YOUR OWN ADVOCATE! Actually, YOU are a star! Not so 'n so! YOU've gone thru more, pain and loss and the like! And, you can become a star for your area by talking to your area, state and national representatives about who you are and why you're there and why you care!

BTW? The neuropathy group you mentioned is NOT qualified as stellar in the various 'giving' evaluations. They don't post their annual reports nor do they distribute them. Take a look at the board? Then watch it...it never changes. I used to evaluate non-profits? A non-changing board, means a non-evolving organiztion. Enuf said.

REMEMBER: WE ARE THE STARS! And we deserve to be! - j

I also agree w/Mrs D about BEING YOUR OWN ADVOCATE! Actually, YOU are a star! Not so 'n so! YOU've gone thru more, pain and loss and the like! And, you can become a star for your area by talking to your area, state and national representatives about who you are and why you're there and why you care!

BTW? The neuropathy group you mentioned is NOT qualified as stellar in the various 'giving' evaluations. They don't post their annual reports nor do they distribute them. Take a look at the board? Then watch it...it never changes. I used to evaluate non-profits? A non-changing board, means a non-evolving organiztion. Enuf said.

REMEMBER: WE ARE THE STARS! And we deserve to be! - j[/QUOTE]

Dalhek,

I totally agree. This was my concern. That organization is a sham and a poor representation for people with Neuropathy. We need an organization that can't be bought by DRUG COMPANIES and that is proactive. This goes for many other diseases and disorders. Our medical establishment is running people in reverse.

Neuropathy is not the only disease whose resolution is stagnating and treatment faulty. There are many more. If one were to go to Europe and get treated, they would be in awe of what real problem-resolution medicine can do. We have symptom prolongation- medicine here in the States and it is beyond time for a change.

People are being lied to, hurt and degenerating faster and faster, just for a measly buck. I never paid it any mind until it hit me in the face. But its simple to see how its engineered really crooked and its pretty sickening. I think the best thing we can do for others besides helping them find releif is waking them up to this sobering reality. Hopefully, then they will wake others and we will have a solid foundation.

Change will not happen until people realize that the system is broken. The path toward resolution of this disease and others will not happen until we tell them its broke and ask them to fix it. Real change will occur when all members of these communities are awake and confront their doctors, congressmen and senators about this ineffective establishment. Only when people in numbers stand together and demand this change will the system will be forced to evolve and truly help.

The worst thing we could do is act alone. I think soon we all need to come together and stand as one at some point. One issue at a time, one peice at a time, until this system is forced to legitimize and act in favor of the people it was designed to.

We need a true group advocate in our corner and the Neuropathy Association may not be it Funny thing is I blindly gave them $100 when I found the site because I thought they wanted to help. I guess we can all be deceived.

Sorry for the rant but this has been building for a long time. I started this thread looking to see if others saw this problem, and this confirmed it. This forum and its contributors are awesome. I am now just thinking of other ideas and means to really take action and make this right. This issue is important!