This Is MS Multiple Sclerosis Community: Knowledge & Support

The news about new and upcoming treatments for MS seems to be sporadic and spread out across this board. I am hoping that if anyone has summary information about possible future MS medicine, they can summarize it by adding to this post.

News and information about upcoming treatments seem very positive. I am hoping that within the next year, medication options are widespread and people are remarking about how much more effective the new drugs are than the past history ABCR s.

I love reading about new possible treatment for our MS. It gives me a sense of great comfort and hope. I am hoping in the near future that MS is downgraded from a crippling disease to something that is considered an annoyance similar to a light case of asthma.


Share the good news!!

I found your post very positive and uplifting! Although I have nothing to add about new treatments. Your post made me feal good. You're right, this is our MS. None of us are alone. We're in it together! By continuing to share information we can find out new ideas that might bring us comfort.

_________________
MS is the gift that keeps on giving.

Sorry, time to leave the board.

-finn

Finn,

you are a plethora of information. If you ever play Trivia Pursuit, I want to be on your side.

Antegren and Campath seems to be the most promising. Rumor has that Antegren may be available as soon as next spring or summer. However, an another rumor has it be very expensive. Lets hope it is not priced out of range for most insurance companies and govt sponsored health coverage.

Campath really sounds interesting! I have read really positive notes from folks within the study. If half the stories are, it will be a great stride forward for MS treatment.

LDN...LDN...LDN... Lets hope someone steps up and puts together a clinical trial. One nice thing I see about LDN is that if the results are positive, I don't see where it has go thru the long formal process of being FDA approved. But what do I know?

All be well.

Sorry, time to leave the board.

-finn

Finn

Sorry you feel like a broken record. I agree with Wilson that you're a wonderful resource. Some of us are slow learners.

And, I can't resist the opportunity to tease you. I can't believe my personal favorite estriol wasn't on the list.

Wilson, estriol is a weak form of estrogen, can be taken orally. In a small (6 women) clinical trial it was promising for women with RRMS at the 8 mg dose.

And, perhaps because it can't be patented as a drug (it's a bioidentical hormone), the estriol trial in my opinion never got the attention that the recent trial with statins (Zocor) did. Of course, that really irritates me.

Now, the statin trial did have 30 people and reduction in MRI lesions around 40-45% if I remember correctly. It was a 6 month study.

The smaller estriol trial had MRI lesion reductions in the 85-90% range in women with RRMS and was for a longer period of time (over 12 months). The # and size of lesions increased when estriol was stopped, but decreased again when it was reinitiated.

True, there were only 6 people, but on that particular MRI outcome (which I've learned probably isn't the most important one) the efficacy of estriol was similar to the current CRAB drugs.

Oops, I'm a broken record myself.

But I do have hope that some form of estrogen may be useful in MS treatment and perhaps offer some neuroprotection as well.

Have a great day everyone.

Sharon

Sorry, time to leave the board.

-finn

No wonder estriol slipped your mind! I'm

Of course it would if minocycline was so much better.

And, I should have been more up to speed on the minocylcine before I had my neuro appmt. I didn't know those exact outcomes.

I asked about minocycline at my appmt. but stated only very generally that there was a small study that suggested it was promising. I was summarily dismissed, with "...it wasn't a study, it was an observation".

So, please do keep up the "broken record". You know I'll do the same.

I actually have a lot of hope in This is MS for some potentially breakthrough moments for MS.

In my brief experience it seems like many people with MS (and those affected by it) do a whole lot of independent research trying to understand exactly what it is and what to do about it. In many ways we should be considered, especially collectively, among the leading experts in the world on this topic. We study it and live it.

Because people can share their "individual" expertise by submitting news, writing articles, posting, questioning and discussing in forums, challenging findings or statements, etc. without worrying about patents or profits, I am very hopeful that creative insights, potential avenues to solutions, etc. will continue to emerge right before our very eyes.

Remember that old adage, it's something like, the whole is better than the parts. People with MS can make significant contributions to the "whole", while scientists and researchers do the "parts", which in my opinion is one of the problems with the research.

So Finn, please keep sharing your expertise and wisdom. In many cases it may take a broken record to get past the status quo. And, I won't touch that line from an old cowboy song, other than to say they are doing a small testosterone trial at UCLA.

Hope you're doing well!

Sharon

OK

I am now thoroughly confused. Are you saying that there are better alternative treatments MS other than the CRAB s ? Do you think it is possible that there is not much done in clinical studies for LDN, estriol, and minocycline due to the fact there is no money to be made?

Do you mean that all the neuros are in collusion with the drug companies? Because this what is being implied: either that or neuros and mds are just drones doing whatever the companies says is the correct thing to do.

I am currently taking one of the CRAB drugs. This side effects ruins one day out of the week for me. That is a big price to pay. If there is something out there I can take that works just as well or better...

I just wish I knew what the truth was. I wish I knew what the best thing to do.

Sorry, time to leave the board.

-finn

I agree with Finn about collusion. I am sure there are doctors that are lazy and take what the drug companies say on face value but the majority of neuros I come across are none to fond of Big Pharma.

Unless governments allocate more funding from the public purse it is down to the free market (who are not it in it for altruism) and the non profits.

Many neuros don't have the time for investigating every single trial going on, especially if they are not an MS specialist and working in cash strapped health care systems such as the British one.

One of the best sites for a digest of what is going on in the wonderful world of MS research is the cowboy multiple sclerosis news
www.mult-sclerosis.org/mscowboy.html

Felly

what a wonderful thread... thank you all for sharing your knowledge. We get the same thrill with each new story we post-- it represents hope and a step closer to crushing this disease and turning it into something easily treatable/curable.

That being said, with so much going on multiple fronts and limited resources, we are running slightly behind on our postings the last few days. We have lots of great new stories to post. Please hang in there-- in the meanwhile Finn and Shayk have, as usual, done an excellent job informing the community with their wealth of knowledge.

Finn

Thanks for the minocycline reference.

I am about to nod off here, but wanted to let everyone know there's an interesting article sort of on this topic in today's Washington Post. (For those of you in Canada and Europe, it's the Washington, D.C. newspaper.)

Entitled: Taking on MS: A War on Multiple Fronts



Hope fully you can get to it at
www.washingtonpost.com/wp-dyn/articles/ ... May30.html

If that doesn't work, just try www.washingtonpost.com and go to their health section. You may have to register (but it's free).

Thanks Arron for your kind words and Felly for the perspective you put on it.

Be well.

Sharon

both articles Shayk references are now available on the front page of the site...

Sorry, time to leave the board.

-finn