Am I alone in thinking...

[Hempchick]

Not at all, I have definitely been thinking the same.

[Howie]

I love this post. It overflows with truth.

[agate]

And a big welcome to Robwill57, Hempchick and lunarrays!

It's so nice that people who aren't often heard from have posted in this thread too.

Maybe we'll get to know you better as time goes by. I'm sure that a few words about yourselves would be appreciated, and you can often find information about people here by looking at their Profile and their other posts.

[Howie]

Well, my name is Howie, I love cats and SpongeBob, and......OH Agate, you mean them. Sorry.....Welcome y'all! (That's Southern for...you all)

[agate]

Newbies, please don't mind Howie. He can't help being friendly.

MS does that to you after a while. It makes you super-friendly especially if you're living in the south. Something about the sun's rays.

He's so friendly he'll even post his MRI for you if you give him half a chance but try not to encourage him in that. You can't get much friendlier than being willing to share your MRI with others.

[Howie]

...........now where did I put that thing......

[Cherie]

This is almost like the "old days" when the Community all came together and responded to a new thread or new poster. Welcome to those who are new. I think you will find us a welcoming and understanding bunch. Anyone remember Dr. Howard Weiner's book, "Curing MS"? He was the keynote speaker at our NMSS Chapter Annual meeting a few years ago just after it was published. The bulk of his years as a physician have been spent in MS research. At the time he spoke, we only had the first 4 injectables available to those of us not in clinical trials. His take on MS is that he considers it "functionally cured" if we go three years without a relapse or progression of disability and he said that a majority of patients who are "compliant" with the dosing of their injections are now falling into that category.

When I started on medication in 2001, All three injectables (Betaseron, Copaxone and Avonex) cost under $1200/month and the copay for my insurance was $25/month. Now all of the meds including those three and what have come after are in the $4500-$5500/month range. That's a 500% increase in cost for something that has been on the market or in testing now since the mid 1980s!. And now, my insurance wants me to pay a copay of $100/month for a med I have been on for years at $25/month. So I am on the drug company's co-pay assistance program.

I have a friend who has devoted his life to stem cell research and has been able to reproduce myelin in the lab and in animals now for more than 15 years. He says everytime they move to the human model, it does not work and he is stymied as to why that is. Myelin repair Foundation, as I read what they are producing, seems to be doing more and more with autologous (self) stem cells meaning that they take your own cells, spin out the stem cells, culture them and grow them then electronically treat them to function in a certain way so they can become myelin producing. Last I heard, they were finding better functioning of the process when the treated cells were injected into the spinal fluid rather than given intravenously hoping they would make their way to the brain. For years, the MRF was non-profit and relied on donations to do their work then Biogen stepped in and began to fund some of the more promising work a while ago.

Even if they do find a cure for MS, I suspect it may come in the form of a vaccine for those who carry one of the identified 130+ genes that seem to play a role in MS. And I suspect it will be given to our children with those genes active but who do not yet have an MS diagnosis.

In the meantime, we can do a lot to generally improve our overall health and function and feel better. And if taking medication daily or weekly or monthly slows the progression, then all the better!

And, no, I am not always this "up" about it. Just ask all the long term users of this forum who have "known" me for 10+ years.

[SalpalSally]

Excellent helpful post Cherie. Thank you.