Possible cure for MS could be one trial away???????

My husband and I watched the local news 3 nights ago and I couldn't believe my ears when they started talking about curing MS possibly.

Here is the story in print if anyone has any better insight or ideas than we do.

      http://www.abc4.com/content/news/4_your_family/story/Possible-cure-for-MS-could-be-one-trial-away/PUXL8AzzG02VEtJPdMGo8w.cspx


“This is a chance for  me and it should not stop with me.”Unfortunately, it could. Michelle believes she is the last patient accepted into the second of Johns Hopkins clinical trials, and it may be the last. Dr. Kaplin says that although the first two trials were exceedingly promising, and no side effects were reported, outside of the usual reactions associated with Chemotherapy, there may be no more opportunity to test what could prove to be the cure for MS and other autoimmune disorders. “We need to do a randomized clinical trial, a much lager trial ,between 150 and 300 patients. It’s a very expensive process. We need 15 million dollars to get this done.”

Years ago when my doctors were waffling between what kind of MS I had... chemotherapy was offered to me... I didn't take them up on the offer though... I had already most of my hair in my weekly rounds of solumederal and at that point there was no good news as a result.

Has anyone else been offered chemotherapy??? Has anyone else seen any stories like that broadcast in their local areas?

Ok thoughts on this are welcomed please... this story is all I have thought about this week!

[sllowe]

Hey there,

Thank you Erin! NO experience here, but my thoughts are, if my CNS were under continued attack by these misguided cells, I would def. take tysabri, or chemo drug to halt them. And, then just pray I make it out to the other side of what chemo does.

We have had some members on them. Funmonkeytoes who has a very progressive MS has been on more than one chemo - haven't seen her in awhile, but I always use posts like yours as an opportunity to check in with her to see if anything is working.

ttys,
Shell

[AmishErin]

This was just mind blowing to me... on the live news feed they had a gentleman from the insurance agency talking about the cost... he stated that because the drugs that would be used were decades old, all the patents had run out on them... and that going into a study using them held no financial incentive as all of the drugs in the study were basically very economical.  

WHAT!!  90% success rate 3 years out but the drugs are too cheap??!!

I never have tried the Tsarbi... the one real life connection I had to MS was a lady that my Mom works with.  They put her on Tsarbi and had great results for a few months... then she died of a brain dissease.

I have been off of my Rebif for almost a year now.  Not cause of anything scary I am just tired of poking myself.

[Quixotic1]

This is the HiCy protocol that we have discussed before.  The main drug is cyclophosphamide.

Quix

[Quixotic1]

If every patient with MS would give just $40 we could fund that study.

400,000 patients in US (with many more in Canada) x $40 = $16,000,000

Q

[Quixotic1]

brain just chugging along - how in the world can this work with CCSVI?

[supermum_ms]

Just a thought, would CCSVI be then classified as one of the MS mimics? I gather the issue with CCSVI is going to be one of classification, if the stenting works and stops the MS like lesions then the issue was CCSVI and not MS. Well, i'm still not convinced that CCSVI is the cause for everyone with MS, again i get back to the same questions.

Cheers.....JJ

[Quixotic1]

I really don't know.  Am sitting back to see what unfolds trying to keep my brain from racing.

Q

[shoshin]

I think we're all waiting to see what happens. One thing to keep in mind is that even with the CCSVI theory no one (or no one sane) is saying that there's no autoimmune component to MS. They're just saying that maybe it isn't the autoimmunity that is causing everything else in MS.

The conventional wisdom seems to be that MS is an autoimmune design and it's the cascade caused by the dysfunctional immune system that leads to damage to myelin and axons and causes the neurodegeneration. This hasn't been proven though and there isn't a definite mechanism.

There is a minority opinion that has questioned the relationship between autoimmunity/inflammation in MS and neurodegeneration, asking if maybe they aren't two parallel processes or if neurodegeneration might even be the primary process (see for example this article I posted about recently http://www.medhelp.org/posts/Multiple-Sclerosis/Prime-mover-for-MS-lesions-not-autoimmune/show/1161501)

So I don't know that CCSVI is incompatible with the fact that things that improve the functioning of the immune system in people with MS are helpful.

Anyway, if CCSVI does prove to be correlated with MS (waiting for the Buffalo results), there's a lot of research to be done and a lot of hypotheses to be made and investigated..

sho

[georgegoss]

There is a cure for MS now. It will be FDA-approved in approximately ten years timeframe following conclusion of the phase III clinical trial currently underway. You can read all about it here:

http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

[summerluvr]

I know the stem cell transplant seems like it will be a possible cure for MS. And I hope it will be!  What I have difficulty with is I have had a stem cell transplant (auto - means I was my own donor, and I think this is the same for the MS trial), and I am now in a complete remission (no detectable cancer cells) but in Multiple Myeloma very few people are cured from the stem cell, we are only achieve a remission, and the avearage median time to relapse is between 2 years and at the upper end 5 years. So if this is to offer a cure for MS how is this overcome? Or is the stem cell transplant different?  Or is it the nature of the diseases? I am not a doctor or science person!

[COBOB]

MS may not even be a single disease, so expecting a single cure might be a bit of a stretch.  Stem Cell therapy may have some promise for some cases, I'm not sure it will work for all.  If some MS has a vascular cause, I  can see no way that stem cells will help with that.

In other words, there may be "cures," but finding out when to use the right one for the cause might be a bit trickier.

Bob

[Lulu54]

hi georgoss and welcome.  I took the time to read your blog and it is a great story.  I appreciate your objective update on symptom improvment - if you had listed everything at 100% resolved I would have immediately dismissed what you had to say.  The continued but slowed improvment makes sense.

More than once I have written here that I have great hope for stem cell therapy in treating ms.  But bob is right - which form of MS it will work on  is unknown.  Those biomarkers for MS that have been in the news lately might help to determine which MS type is gong to respond to which therapy.

Thanks for trying this treatment and sharing your results- I hope you have gret things to report at 24 months.

be well, stay well,
Lulu