This Is MS Multiple Sclerosis Community: Knowledge & Support

Okay, I may just be being ridiculously positive here, but after all of the research I have done on new and emerging treatments and new discoveries, whether that's scientists isolating the genetic triggers that cause MS, or making so much progress with t-cell identification, or the advancements in stem cell experimentation, I have to believe that the learning curve for this disease is getting faster and steeper all the time. The situation in MS is busier and more research is being done now more than ever.

And this leads me to my theory that in five to ten years there will be a cure for MS, even if it's in the pipeline - we must be near the tipping point for a convergence of all of this progress, where all of this information comes together to give a clear picture of a complex disease, and then a specific treatment... There just has to be... right?

No, I think you have logic in your thinking. So many researchs and so many treatments in the pipeline...It does make me feel positive. Especially the HSCT one

i think if the millions of $ spent on drugs where actually spent on finding a cure
and if some dr's werent such babies about working with other drs. if the drs all came together an worked as one, we probably would have cured almost every disease especially neurological ones

but at least theres still a few that can put their egos aside for our benefit

I think you are right that progress is being made in understanding the complexities of the human body at a cellular and molecular level. As these are better understood all diseases are benefitted. As regards MS, this is a painfully slow way of progressing.

What troubles me most is how little research goes into finding the cause of multiple sclerosis, which is something we still don't know around 150 years after the disease was first documented. A lot of people BELIEVE that the cause is autoimmunity (whatever that really means), others BELIEVE is is some kind of virus perhaps Epstein-Barr virus, others BELIEVE it is something to do with the flow of cerebrospinal fluid while still others BELIEVE it's a reaction between genes and the environment (like doh! but thus far genetic research hasn't revealed much w.r.t MS). These are just a few of the theories.

Let's not be in any doubt. They are just theories. None is backed up with hard data and until they are, they are no better than guesses.

What we need to see is research at the cellular level of the kind documented in this paper by Barnett & Prineas (http://www.CPn Help.org/files/Ref1_Annals04.pdf). A surprisingly small proportion of total MS research actually looks into how MS does its damage in human beings (for my money mouse models are a waste of time and resources because we know that the diseases are not MS). How can you cure or prevent a disease if you don't know what its cause is nor how it operates at the cellular and molecular level?

What I'd like to see is close to 100% of governments' and MS societies' sponsored research looking into the cause. Big (and little) pharma have no interest is the cause. They are companies and as such they need to see their profits maximised. They are looking for quickfire treatments. Because big pharma have much more money than MS Societies, they can be left to look for treatments while MS Societies look for a cause.

No cure without a cause.

As people with MS we should all be haranging MS Societies to spend more their research dollars on finding the cause.

Best,
Paul
http://www.mult-sclerosis.org

Wow! I completely agree. This one comment of yours was the opinion I expressed right after my initial dx 8 years ago, once I found out how limited & depressing my treatment options were.

I was actually bullied toward the meds anyway, of course, but my medphobia has always kept me from trying any of them.

P.S. I link my posts here to info at http://www.mult-sclerosis.org a lot.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Good points Paul, although I think it's pretty much solid fact that MS is an autoimmune disease, at least in the RRMS phase.

Do you really think so?

Read that paper by Barnett & Prineas. (http://www.CPn Help.org/files/Ref1_Annals04.pdf). These two are renowned neurologists not alternative practioners or snake-oil salesmen. In essence, what they found was that oligodendrocytes start dying before any immune system cells show up. The first immune cells to show up were macrophages and only later T- and B-cells. While it's clearly the case that inflammation is very often associated with relapses, perhaps it's a mistake to see it as causal. This position is further supported by
1. Computer-assisted MRI scans showing that some of the tissue damage, even in RRMS, is not associated with inflammation.
2. As you allude to: inflammation is virtually completely absent from progressive forms of the disease.
3. Campath studies showed damage continuing after all the T-cells were destroyed, so if nothing else, the disease cannot be T-cell mediated autoimmunity.
4. The very poor performance of interferon beta at delaying onset of secondary progressive and long-term disability.
5. The inability to find an antigen to which autoimmunity can be directed - this different to classical autoimmune diseases such as rheumatoid athritis or systemic lupus.

In support of your position is the fact that interferon betas and Tysabri do appear to effect the incidence of relapses. Then again it might be the case that while the inflammation does cause the symptoms, the inflammation of itself might be caused by a third factor such as the oligodendrocyte cell death as observed by Barnett & Prineas.

Personally, I think autoimmune explanations of multiple sclerosis are in serious trouble but they suit far too many interests to be abandoned. It seems counter-intuitive that the disease changes its mechanism at the point of change from RR to SP. The autoimmune school have to explain all this contrary data - something they haven't managed to do to my satisfaction. If were going to follow proper scientific method, we should abandon the autoimmune theory.

Best regards,
Paul
http://www.mult-sclerosis.org

Hey Paul, the one thing I would point out is that a lot of the things that are believed about the causes are not mutually exclusive. Also some of the ones that are further from the core set of possibilities revolving around some sort of auto-immune condition triggered by a virus (which is my doctor's thought on the matter and she's been a researcher more than she's been a treatment doctor) don't really have any scientific basis.

I really think we're very close in scientific terms and I think the recent success they had using modded T cells to treat lukemia are going to be very helpful for us.

You make an interesting point, and I would counter by asking you to explain the fact that HSCT has been so successful in stopping underlying disease in pretty much 100% of RRMS cases and 60-70% of PPMS and SPMS cases too...

The data is clear, and Dr. Burt's phase III medical trials, I believe, will prove these statistics.

VQ

Hi VikingQuest - I don't know enough about the theory behind HSCT to comment. It's one of quite a few topics I need to catch up on. I gather that the idea is to bulk up on "good" immune cells and thus reducing the effects of the "bad" ones. Let's hope it's at least part of the answer. The fact of the gaps in the autoimmune theory leave me worrying and any treatment that doesn't work for progressive forms makes me doubt.
Take care
Paul
http://www.mult-sclerosis.org

Hi Paul. HSCT is not just bulking up on the good immune cells, it is a wholesale re-boot of the immune system via chemotherapy and then stem cell infusion, essentially taking stem cells from your bone marrow before chemo, cleaning them, and then after the chemo, re-injecting them back in. in Layman's terms, that is. If a doctor explains it this way then leave the building.

I fear that you are correct, and that it isn't quite that simple. Unfortunately those with more advanced forms of ms do not respond quite so well to the treatment and Dr. Burt suggests that it is because it has developed into a degenerative disease, from its initial inflamatory stages.

The truth is, I don't know who to believe at the moment.

With all that said, I am positive for the next five years, that something significant will click into place and at the very least we can expect something oral or injectable that will halt progression for everyone.

VQ

I totally agree that we have to find the CAUSE to find a cure.. but we still have not found the cause or the cure to cancer which receives more attention and research than MS... I think MS is some kind of slow cancer in the way that the disease leads to brain atrophy, there must be some kind of "cancer" eating our brain and muscles... same for ALS and all those terrible degenerative processes

..

I couldn't have put it better. Clearly we will need to know the cause to make a more effective and safer treatment for MS in the future, but the fact that we have the new sledgehammer approach of HSCT at all is a gift which millions of people before us weren't able to take advantage of. As soon as I need it, I will have it done without a doubt or second thought. The only thing that sucks is its cost, which sadly excludes many people with ms from being able to have it.

Lets hope that BG-12 is all its cracked up to be, I think I'm right in saying it cuts exacerbations by half with no real side effects AND it's in pill form, which is pretty amazing, and that isn't even when taken with copaxone etc...

If I'm wrong re: BG-12, I'm sure someone will correct me.