When first diagnosed, I paniked and followed a very rigurouse diet... with time I felt no difference and so relaxed it. Now I'm believing it most have an impact if we can not really sintethise VLCFA. Then learned that our own body produces VLCFA even if we do not consume it. So the result... I am confused now and never feel any difference regardless of the diet. Has anyone really felt any feal phisical difference due to diet?

Hi fdemirada, I agree. I've tried diet. I don't think they have a clue and there's no incentive for research & development. There is not enough of us to make it cost effect. $$$ Cancer, yes. MS, yes. Us, NO. What do you think? Is fdemiranda your first or last name? John OK just jidding around on your user name. You have to keep it light right!

Fernando is the name.... I know there is very little R&D for us... but just thinking, the origin or our problem is the LCFA, so what if we had removed them from our diet even before we had problems... I'm seriosly thinking becoming a vegetarian but don't know if that would help at all

My husband was a vegetarian for most of his life and didn't get any symptoms until he was 40, which incidentally was shortly after he gave up vegetarianism. So maybe it did help. He tries to limit meat now but so many other things have fats that it's hard to know for sure.

It will not help. Lorenzo's family put him on a zero fat diet for several months. The result was not change whatsoever in VLCFAs. As previously stated, it you do not eat VLCFAs, your body will manufacture it.

I think everyone is different....just my humble opinion. I didn't have symptoms until 30's, and all I ate was junk food full of fat. John

Here's some 2-day-old scientific news that gives me hope. My son found it on the internet, from Science News: Apr. 15, 2013 — Researchers at the Stanford University School of Medicine have succeeded in transforming skin cells directly into oligodendrocyte precursor cells, the cells that wrap nerve cells in the insulating myelin sheaths that help nerve signals propagate. http://www.sciencedaily.com/releases/2013/04/130415124807.htmhelp nerve signals propagate.

sorry, the address should end with htm. NOT with "help nerve signals propagate."

Just wonder how long before the translate this into an effective treatment for us all... Thank you for sharing!

This is very encouraging Sally. Thanks. Fingers crossed.

I think they will be able to fix us in the next 5 to 10 years. We just got to hold on, technology is accelerating exponentially these days. Here is the website for another company that is working on diseases like amn and ms, its a pharmaceutical company. http://www.nutrapharma.com/ The drug they are developing is called RPI-78M. Its being designed for MS and AMN. From what I can find on there website it recieved a patent for MS in october 2011 and arthritis in febuary 2009. Latest I could find on AMN is they were doing a clinical study that ended august 2008. The data was being prepared and it says the findings would be out early 2009 but I cant find it. I might call the company to find out what the results were.

I found this on rareshare, says its in Phase II for FDA approval. http://rareshare.org/communities/adrenomyeloneuropathy/treatments/rpi-78m I got this off FDA site to understand the phases; Phase 1 studies are usually conducted in healthy volunteers. The goal here is to determine what the drug's most frequent side effects are and, often, how the drug is metabolized and excreted. The number of subjects typically ranges from 20 to 80. Phase 2 studies begin if Phase 1 studies don't reveal unacceptable toxicity. While the emphasis in Phase 1 is on safety, the emphasis in Phase 2 is on effectiveness. This phase aims to obtain preliminary data on whether the drug works in people who have a certain disease or condition. For controlled trials, patients receiving the drug are compared with similar patients receiving a different treatment--usually an inactive substance (placebo), or a different drug. Safety continues to be evaluated, and short-term side effects are studied. Typically, the number of subjects in Phase 2 studies ranges from a few dozen to about 300. At the end of Phase 2, the FDA and sponsors try to come to an agreement on how large-scale studies in Phase 3 should be done. How often the FDA meets with a sponsor varies, but this is one of two most common meeting points prior to submission of a new drug application. The other most common time is pre-NDA--right before a new drug application is submitted. Phase 3 studies begin if evidence of effectiveness is shown in Phase 2. These studies gather more information about safety and effectiveness, studying different populations and different dosages and using the drug in combination with other drugs. The number of subjects usually ranges from several hundred to about 3,000 people.

I found more recent info on the RPI-78M. As of August 2011 they were conducting a double-blind, placebo-controlled study for AMN involving the drug. This article was published when half of the patients that were on RPI-78M switched to the placebo and the placebo group switched to the drug. The results looked promising at that point. http://isepapele.wordpress.com/2011/08/27/nutra-pharma-announces-successful-completion-of-6-month-patient-crossover-in-amn-clinical-trial/

Thank you for the discussion!

Physicians who have treated people with AMD say that changes in diet have no impact on the illness. RPI-78M is approved and being used in the UK and Canada. I have not discovered how effective this treatment is. Nutra Pharmaceuticals is working on RPI-78M, but it may be some time before this drug gets through trials. This is a small company with some major financial problems. They will have to partner with a bigger firm, and then they can improve their cash flow situation. You should all just take this one day at a time. Enjoy your time here on earth. Smell the roses.