Neuropathy Expert spoke at our meeting last night
 

Hi All.

Last night Alan and I went to our monthly Peripheral Neuropathy Support Group meeting in NYC. We were fortunate to have as our guest speaker, Dr. Norman Latov. Dr. Latov is Professor of Neurology and Neuroscience, and Director of the Peripheral Neuropathy Clinical and Research Center at Weill Cornell Medical College.

He very kindly consented to my recording his presentation. I can't upload long videos to youtube. So I did the best I could and made one video out of various clips I took during his presentation. There were no microphones so you might have to adjust your volume.

http://www.youtube.com/watch?v=2Tc5Lz-g8Nk

I hope you find his presentation informative.

Melody

Cool! Thanks Melody!

Anytime, Mrs. D

Oh, I found something new about neuropathy. I'm going to copy and paste a link to this thread. It's a new treatment.
Melody

Hi Mrs. D.

This morning (and I forget how I came to find this site), I stumbled upon this website.

http://www.neccp.com/chemotherapy-in...uropathy-cipn/

They are located in Stamford Conn. The doctor is a chiropractor and I phoned them. Spoke to a very kind nurse.

I asked her "what's the difference between this and using a tens or a rebuilder?" and she explained they put the electrodes "not on the place of pain" but higher up. And it affect neurons in a special way.

Insurance doesn't cover it and it's a course of 5 or so visits, and it's about $2000. So I did ask the pertinent questions.

I also asked if they treated anyone who had NON chemo induced neuropathy and she said 'oh yes"

So if anyone is interested they should check out the website.

Melody

Hi Melody. I have been researching PN for many years. I have never read where if the found there cause of PN there was anything they could do about it. Thirteen years ago i took ZOCOR. Unknowingly it said PN was a side effect.
Within 3 months of taking it i had PN.

Why spend millions of dollars trying to find the cause when their is nothing anyone can do about it. I look for ways to lessen my pain so i can have a better life.


Less pain to all. GEORGE

Thanks, Melody, that was very interesting to see Dr. Lotov--I've heard about him for a long time. Joan

There are many posts (many of them negative) about
Calmare therapy at RSD forum.

Search the word "Calmare" at the top of the first page in the search function and you'll see actual experiences with it.

In general it is a "hot topic" here, and receives many heated replies.

Oh you are quite welcome.And be assured, whenever we have a keynote speaker at one of our meetings, if I'm able to record it, it will show up on this very forum the next day.

All the best

Melody

Really??

I'll be sure and look them up.

Thanks much, Mrs. D

Some people break up and serialize uploads. I've seen it done with old movies that have fallen into public domain. Keep the same title with "- Part 1", "- Part 2", etc.

Doc

Oh, I know this. I always watch old movies (in various parts). But how come some of them are all in one part. Some movies are 90 minutes. Up on youtube. I wonder how they did that?

Mel

Google: reversible peripheral neuropathy
Some neuropathies (e.g. B12 deficiency) are reversible. I think it's definitely worth screening for the causes that are reversible, or in which progression can be halted, or in a very few other instances.

Beyond that I tend to agree that resources/efforts are better utilized in finding ways to reduce the sense of suffering and improve quality of life. Obsession with finding a cause can be as/more detrimental than the PN itself.

Doc

Knowing a cause is important, to decide to use IVIG for example, in autoimmune cases, or those caused by bacteria from foods, or fish toxins.

Also if the cause can be removed from the environment, then that will help prevent progression. If one is getting PN from vaccines, then avoidance of vaccines is the answer. IVIG may help

Gluten? --go gluten free

drugs? --stop the offending drug-- mito support may help

pesticides, solvents-- avoid avoid

diabetes--- control diet and carbs

thyroid? -- fix that

dietary deficiencies-- fix B12 or other vitamins/minerals

But the hereditary causes? still there is no definitive treatment for these.
This is only a partial list... but it can be very helpful to find a trigger for many. But one should not lose sight of enabling healing to take place...healing I think is the key to PN.

Mrs.D,

How high/low should be the TSH to determine its the cause of the PN? My doctors seem to be not concerned about the numbers. Is thyroid problem affects the small fiber or large fiber or is it both?

As I read some posts, I write the list of vitamins/minerals that one can be tested. So far, I have the following list to bring to my primary care physician:

1. manganese; 2. Zinc; 3. VitD; 4.Vit B1, B2, B3 and B5.

I hope I could still encounter other vitamins/minerals that I would need for testing as I read more posts.

I stopped taking the Glucosamine today....

Thank you.

I think hypothyroid causes compressive issues. This is not totally relieved by vitamins (except maybe zinc and selenium which convert T4 to T3)

Each person is really unique in how they respond to thyroid treatment. Some need some T3 extra, and others don't.
Most doctors will not give T3, but some will. Some use dessicated thyroid from pigs, instead.

I will say this: regarding the glucosamine products. Historically these could be contaminated by manganese. Cosamin DS was a large brand name that had this problem at one time. I don't know if others test for heavy metals or not. So testing for heavy metals may be useful if you have used a glucosamine product for so long. Often we use something, a long time and then take it for granted. Overlooking a flaw in it or a mild slow moving reaction that builds for months/years. So stopping the glucosamine for at least a month or more, may show you something over time.

dont forget vitamin b12


i think that testing for a cause is important up to the point that it becomes an obsession. To Mrs D's list i would add testing for diseases such as lyme, and testing for paraneoplastic cancers are important because of the ongoing damage that would result from those causes. Testing for diabetes or insulin resistance also.

At some point you may have to accept that you dont and probably wont know exactly the process that caused your PN. If there are breakthroughs in testing, or something new develops in scientific knowldge of causation i see nothing wrong with finding out if the new developements may relate to yourself.


It is perfectly understandable for most people to want to know what caused the illness which changed their lives.

I cringe when i read new people that come here reading that testing for a cause isnt important and then saying im not going to do testing about what caused it, i just want to treat the pain because that is all you can do anyway. Those were the attitudes of the medical profession that many posted about ten years ago and that had to be struggled against and fought tooth and nail to get the testing for a cause that should have been done in the first place.