Follow up on emerging drug conference call

[tyyt218]

Lulu brought to our attention a very interesting conference call on the topic of emerging drugs for MS. I found it very interesting and it pushed me to do more research on the topic. I am a chemist/biomaterials scientist so even though not a doctor at all I can read scientific papers and not get totally lost in them. I find all the drugs that have been tested so far are really focused on trying to stop this supposed leakage at the blood-brain barrier but still nothing really hits the cause of MS, which as he said, it is still completely unknown. Yet the etiology of the disease is really impressively suggesting of the importance of exposure to UV light in decreasing the chances of having MS. Few papers I found seem to indicate that changes in the cerebral fluid in patients with MS may not be related to the leakage in blood-brain barrier (Koller et al, Brain (1996), 119, 457). Plus a paper from 2000 (Hayes Proceedings of the Nutrition Society (2000), 59, 531–535) showed that treatment with vitamin D completely stopped the symptoms in mice with a disease that's considered to be a model for MS (experimental autoimmune encephalomyelitis). I have found one recent clynical trial on the effect of high doses of Vitamin D on MS patients (Burton et al, Neurology, 2010, 74;1852). It's promising but not conclusive yet and the authors are planning more trials.
In my opinion if high doses of Vitamin D can decrease the chance of having MS as other drugs, or even more (see Hayes, on mice), and have pretty much no side effects (see Burton et al), it should be really taken in serious consideration. Not to mention the fact that as I said it makes a lot of sense in terms of determing the etiology. Ah, and I forgot--other recent genetic studies show that patients with MS not only have differences in genes related to autoimmune disorder onset, but also in one gene that's related to vitamin D receptors (sorry I have to leave now, I'll put the reference in here later).

[crwriter]

Also, where MS is a disease of exclusion, there could be far more types than we (humans) are aware of...  A disease of exclusion is typically a [we don't know what to call it], so [we shall call it MS].  Nerves die from too little stimulation and create plaques or what we could call rocks for lack of a better comparison.  That was my interpertation anyway.  There could be many different types caused by many different reasons.  

But the point could be made that once the degradation process is in place, it takes on a life of its own.

I am just learning about this disease from yous.  I hope you do not take offence at my thoughtful meanderings.

[crwriter]

Ahhhh but I have been reclusive for years and the bright outside brings on evasion tactics.  And there goes those fads again.  I fully agree that this very well could be the flavor of the month.  I do believe genetics plays a part.

I will follow my doctor's instructions, ask for a DMD if it is not offered, and take my vitamins with a smile.

[Karen99]

Interesting tidbit.  Thank you.  I know you are not suggesting replacing Vitamin D over any of the DMD's.

It is suspected that there are many forms of MS and that may be why some MS'ers benefit from Vit D more than others.  Speculation of course, but most of what is known of MS is speculation.

Research will ultimately hold the key for the unraveling the mystery of MS, even stumbling across a vital piece of information that has valuable info applicable to MS.  While I attended a conference, the subject of research was the topic of discussion. So much is being learned and discovered at such a rapid pace that no one can keep up on it.   Bringing the information together and available, and how it can relate to an entirely different disease process is much needed.

I think there is a relation between MS and low Vit D levels.  Could this be a cause or one of the "environmental factors?'  Or do some MS folks develop a deficiency once MS develops?  An example: As soon as most woman becomes pregnant she becomes  "anemic."  The doctors prescribe iron supplements.  Is it possible that during gestation the body prefers to be anemic for reasons we don't understand?

The suspected link between MS and Vitamin D is nothing new, it had been set aside for a long time.  I am glad they are taking a good hard look at it again.

[supermum_ms]

One of the problems with the current accepted mice generated model of MS ( experimental autoimmune encephalomyelitis) is that the cause is known and thus manufactured, its not true MS but a theorectically controlled working model. Its the closest thing todate but still with out knowing the cause of the real deal, it still equates (imho) to not MS but one of its mimics.

Think of it this way, for decades stomache ulcers were thought to be caused by stress, an emotional manifistation and the medical intervention was based on that causation. Stress exaserbated the ulcer but did not in fact turn out to be the cause, all the working models used the same principals and they were wrong. Once the cause was discovered, the medical intervention was completely different, the cause was known and science got to work developing better drugs to treat it.

At this stage of the game, vit D possibly plays a part in 1000 conditions, it seems like its the flavour of the month/year lol everything is being studied and there is enough evidence to make vit D relivant but does that mean its the cause of any of these studied condition or does it mean that vit D levels are just another necessary ingredient for human's? I have 0 faith that vit D will change the course of MS, and changing the course is what the game is all about.

Until science finds the MS cause there will be no cure, so changing the course is the only proactive option available, thus (imho) everything is a bandaide, a gamble but without an alternative drug therapy a 33+% chance of slowing it down seems a heck of a lot better than no chance at all.

My 2 cents...............JJ

[jujuminx]

You said it Addi!!  I cannot fathom why some people are so skepical of modern medicine and medical studies, and so trusting that their disease somehow won't progress (denial?) if they just eliminate animal products from their diet or take suppliments.  While I don't begrudge anyone from making their own choices, I really think they are underestimating MS.

As far as vitamin D goes, well, many of us here on this forum have drs that have recommended vit D suppliments and we are aware that we are more likely to be Vit D deficient.  The whole vit D, sun light, farther from the equator you are the higher incidence of MS there is, has been known for a while now. I would never just take vit D suppliments and not my DMD's.

I believe one of the reasons they haven't found the "cause" of MS is that there are multiple factors, multiple predispositions, multiple kinds of, and therefore multiple potential "cures" for MS.  What works for one may not work for another, just like DMD's are more effective in some and totally ineffective in others. There won't be a silver bullet in the fight against this disease.

So most of us do what we can. We take our suppliments, we take our DMD's (if we are lucky enough to get them) and we take the best care of ourselves that we can.  And ALL of us, even doing all of these things, still have MS.  One day I pray that that will change.

Julie

[addicted2harleys]

Thanks, ess.  I feel so very strong about it too.  I believe I have such difficulty with acceptance because of this.  I absolutely believe my life would be different today if things had been different.

It kills me to see people diagnosed with MS and not get on a DMD.  That is no different than playing Russian roulette, as far as I am concerned.  

Here I am, deathly afraid of needles and I pray for the option of receiving a DMD everyday.

Addi    

[essdipity]

Addi, this is what we tell so many members here. But there's nothing like hearing from someone who's been there.

Thank you!

ess

[addicted2harleys]

Thanks!  That was much easier to read!

I am glad your bf is getting the vit d.  I do know that is important with a lot of MSers.  But that is NOT going to slow the progression of the disease.  :(

I have heard of quite a few MSers that had very little symptoms opt to hold out on the DMD and then when their next flare hit (sometimes it was years later) it hits with a vengeance.  Or they opt out of the DMD and their next MRI shows a large amount of disease progression.  

I only wish I had the option to get on a DMD way back when mine first started.  I have never been on a DMD.  When I first started getting symptoms they were very small ones.  I didn't get hit with a big flare until four years later.  

Now I am in a wheelchair and have other major issues.  I can't help but wonder if all the heavy stuff I deal with everyday now would have happened if I had the option for a DMD back when things were "okay" for me.  

I would hate to see something like this happen to anyone who has the option to get the DMD and doesn't take it.

Addi

[tyyt218]

Hi Addi,

Oops, sorry, thanks for letting me know about the paragraphs.

Here is a simplified and more spaced out version of my points above.

Basically I was saying that some studies show that high doses vitamin D given to mice with a model for MS completely stop the disease.

Other studies show that people with MS have a difference not only in genes related to autoimmune response but also to vitamin D receptors.

The geographical disposition of MS definitely points to an influence of low exposure to UV light on the onset of MS -- and exposure to UV light is what triggers vitamin D creation in our bodies.

A preliminary clinical trial on people given high doses of Vitamin D shows reduction in attack frequency compared to control groups, and no side effects. More studies are needed though to confirm these results.

So I guess my point is that after reading into all these things I understand better why my boyfriend for now prefers to just go for high doses of Vitamin D instead of the drugs that were discussed.

And as a scientist I truly hope there will be more research into this.

[addicted2harleys]

Hey there, tyyt-

I don't have any response to what you are talking about here at this time.  The topic seems to be more than my mushy brain can handle at this time.  :/

But, I did want to make a request of you, please.  There are a lot of people here who have vision problems.  If you could break up your post into smaller paragraphs, more people will be able to respond.  

I know I had great difficulty reading your post because it is all in one great big paragraph.  The big paragraphs play with my eyes and everything kinda blends in together.  

Thanks!
Addi