remyelination

Arcee · Post by **Arcee** » Thu Mar 10, 2005 6:26 am

Hi All -

I've been wondering about remyelination and thinking that some of you might have some insights. I am particularly interested now because my latest MRIs showed a decrease in lesion load. I was not on any conventional medication that could have contributed to that outcome (and given issues with my liver and the Tysabri mess, it seems unlikely I will be any time soon). I understand that spontaneous myelin repair is not unheard of in RRMS. Does anyone have any ideas surrounding it?

I would like to believe that there is something we can do that could perhaps motivate myelin repair or at least minimize the destruction. My neuro would contend that it's a random thing that happens at the beginning of RRMS; my integrative physician would point to changes I have made to my diet (e.g., elimination of trans fats) and supplements (e.g. increase in essential fatty acids). What does your experience/research/intuition tell you?

Thanks in advance for your comments,
Arcee

OddDuck · Post by **OddDuck** » Thu Mar 10, 2005 9:14 am

Hi, Arcee!

I would like to believe that there is something we can do that could perhaps motivate myelin repair or at least minimize the destruction.

To be optimistic, I truly believe there is. And researchers are working on that very aspect.

My neuro would contend that it's a random thing that happens at the beginning of RRMS; my integrative physician would point to changes I have made to my diet (e.g., elimination of trans fats) and supplements (e.g. increase in essential fatty acids). What does your experience/research/intuition tell you?

Personally, in my opinion, I would think it's a combination of both!

As the Rev would say.......

Be well!

Deb

kareng7 · Post by **kareng7** » Fri Apr 29, 2005 6:40 pm

Arcee,

I'm interested in the topic of remyelination as well. In doing some research, I came across this organization: http://www.myelinrepair.org/ This group of researchers is about an hour away from where I live. Their collaborative team approach gives me great hope. And of course, they're not the only ones doing research.

Assuming they cured MS tomorrow, they will still be pushing to find a way to repair myelin, and not just for MS but for other diseases and injuries that damage the nerves.

My intuition is that the body wants to heal itself whenever possible, and certainly you can help it with the right additions/subtractions/substitutions of foods (the fuel your body needs to live) and supplements (also fuel). So go ahead and take credit for the positive changes you've made. You deserve it.

Arcee · Post by **Arcee** » Sat Apr 30, 2005 8:03 am

Kareng7 -

Thanks for the information and support. I too checked out that organization and felt buoyed by their efforts. If you end up connecting with them, it would be great to learn more about what they are finding, so please keep us posted.

I do like to think that what I am doing has helped with remyelination, rather than it being random. I guess I am disappointed that I can't find information (in addition to our beliefs, which go a long way with me) to help support or not support the contention. So if you come across anything in that regard, I'd like to hear about it to. Am also curious about things you might be doing.

Take care,
Arcee

Sharon · Post by **Sharon** » Sat Apr 30, 2005 2:32 pm

Arcee -

The Myelin Repair Foundation will email you updated information and news bulletins - you can sign-up at the website. Also, I was able to talk personally with the administrator. She was very nice - answered all my questions about the foundation and the research. My understanding is they have just recently filed for a patent. Who knows? Maybe in a couple of years they will be able to start trials.

Another website that emails updated information is Acorda Therapeutics. They are working on a drug called Fampridine (spelling?

).