Welcome to...

Bill's Brainstorming Page on Multiple Sclerosis

whereas: I've been diagnosed with MS.
whereas: Lorenzo's Oil is a cool story of a Layman learning medicine and curing a demyelinating disease...
whereas: Multiple Sclerosis is also a demyelinating disease.
whereas: I'm starting to bore other people with my weekly theory of what MS is and how it might be cured...
whereas: I got a call today from a genetic researcher and it got me thinking...
whereas: I read an article this week that weirdly suggests MS might be a Sexually transmitted disease (even thoug virgins get it, and 99% of couples don't...)
wheras: The internet is an especially powerful medium for collaboration and group problem solving...
whereas: I actually find cytokines and fat saturation kind of interesting...
whereas: I have web space for work anyways... 

I hereby declare this brainstorming session on MS: defining it, curing it...  open:


Topics:

What is MS ?
How might it be cured?
What can patients do?
Notes and discussion on handling it until its cured...
MS Links (annotated)
Discussion Forum

NEWS...

-Jan 15. I did the page of reading on LDN and MS last november....
-October 15 2003, This page actually gets lots of hits, so I thought I'd better update it...
-Aug 9,2003...a revamp of the page...See the multiple theories under 'how might if be cured'
-April 4,2003...more work on my ms  links page...
-Jan 16,2003...I put up my new  links page...
- Dec 1, 2002    OK I got a discussion forum up and running.
Click here to check it out...
- September 28 2002, and this page is 4 days old, and 2 hrs work old.
 Over time these topics will probably each contain a disussion area, and databass of info. For now they're just some random thoughts on MS I've had, perhaps to start the discussion...




What is MS  ?

An evolving definition:

A disease that attacks your central nervous system (This is the brain and the top part of the spine).
 It strips the myelin off of the 'wires', (like the rubber coating on electric wires) and eventually or sometimes it causes permanent damage to the axons that lie underneath the myelin's protective coating. This is nervous system damage and can result in everything from mildly numb fingers, blindness, to being wheelchair bound.

   Remember though, the brain can reorganize to do the same tasks in new areas,
so MS is a disease where the blind learn to see again, and those who can't walk, walk again....

   Another way I've heard it described is a 'rash on the nervous system'. This allows one to think about the white spots of inflammation that show up on an MRI as transitory things...(neurologists have now told me this is an obselete idea)  They may not even be there on the next imaging session...?

   Researchers find it interesting that MS is confined to the central nervous system. Often it is seen as a problem with the blood-brain barrier where things are getting through that shouldn't be.

   It is also described as an auto-immune disease, where the messages get confused, and the immune system starts attacking itself.

Here's a better definition

How bad is it?

   Probably a lot more people have MS than are diagnosed. Up to 5% of people who get MRI's for
non MS reasons turn out to have lesions. The important question is 'are the lesions in a place that does damage?'
       The good news is that about 75% of people
with MS don't have to ever use a weelchair. A German study suggested as few as 2% of people have their lives shortened by the disease, most people now refer to it as  non-fatal.
       On the downside 50% of patients diagnosed with relapsing remitting MS will go secondary progressive within 10 years. Secondary and Primary progressive MS are serious, life-changing illnesses.
I'm pretty impressed with how intelligent these people still are though...

       In the new millenium we have some positive role models... The character of the
president of the U.S. on the show ' West Wing ' has an undisclosed case of MS...and in reality the Talk show host Montel Williams has MS. ..  ( another link )
2003 gave the MS group a new poster person in Terry Garr .


         Otherwise it's considered a pretty bad thing...in harsh cases, 'the most dreadful of diseases' and it makes sense to try and  cure it.

Some other important, random facts I've been putting together:  

-Cytokines, the messangers of the immune system, could be the real factor. Demylenation may just be a
symptom of imbalances in the cytokine ecology of the immune system. For example, when we boost the
amount of naturally occuring interferon in the system, it seems to help. Only a few years ago an experiment with interferon gamma (not interferon beta, which is the common cure...) went awry, (made symptoms worse) so we know of a delicate balance between forces in this system where some things are 'engines' and some things are 'brakes'...

-EAE is a kind of demyelinating disease that can be generated in lab animals by injecting a bit of Myelin
from another animal into them. It gives similar symptoms to MS, so it is the 'animal model' that is used in  research.  It can be easily cured though...? EAE standsfor some kind of experimental encephalitis. So MS has some weird relationship to encephalitis...they might both be inflammations of the nervous system...?
 
-MS occurs mostly in areas near the poles. (except Japan?)
If you were raised in the tropics in the early part of your life you probably won't get MS.

-perhaps getting a toxin (in my case an environmental toxin in early life is suspected, as several kids from
the neighbourhood have gotten sick) combined with a genetic predisposition to get the disease are the factors...

-When the british showed up in Japan and other island nations the incidence of MS went up.
( this week a madman in England proposed that this made MS a sexually transmitted disease, even
though many virgins get it, and 99% of married people with it do not 'give it' to their mates...)


        

How might MS be cured  

I don't really know. I'm just a patient but this week's theory?


The cytokine theory
The Diet theory
Foreign Body rejection
The vitamin D/ultraviolet theory
The iron theory...
The testosterone theory
The water cure
The lipid theory
The toxin or virus theory
The LDN work .




CytoKines: Medicines like Interferon are getting involved in the immune system's messages.
We know that taking this medicine makes MS attacks less common. Injecting interferon 3 times a week seems to be the best treatment Big Science, has to offer right now. They charge a ridiculous amount for it though, and here in Canada, where I get it almost free, I feel guilty evey time I read about someone else  who doesn't get helped correctly in health care. Learning how the cytokine
messages work is a big goal of researchers on MS as well as other other immune diseases...Right now
it's only one step up from guessing...Since I work with computer visualization, one of the things I'm interested in is trying to visualise the cytokines in the immune system in small web movies...

At  embrel.com we see a miraculous cure for rhumatoid arthritis. This is another inflammatory
disease. The cure is a cytokine. Here's how it works :  (check out
the cool flash animations on the right...)

One of the strange spinoffs from this is that a small percentage of patients might get MS from taking embrel!So Tumor Necrosis Factor is one of the cytokines that need to be kept in balance..
 
Fats:


       Stopping eating animal fats might be the thing. Dr. Swank was a pioneer in treating MS patients with
a low fat diet. It's still unclear to me as to whether his diet would create just as many health benefits in a group of people without MS however...
      Perhaps something like EAE is caused by trace amounts of Myelin in the animal fats? (conjecture)When an animal's myelin basic protein is re-introduced to the same species the animal gets EAE. Maybe what the British brought to the various islands, was a new kind of diet heavy in animal fats... This fat might have trace amounts of myelin that over time cause a reaction to occur....??
     The problem with this theory is that cannibals don't get EAE. They get Creuzfeld-Jacobs(spelling?) disease, which is more like mad cow. Prions.

       A study I read about in Norway between the coastal fish eating people and the inland meat eating people showed a far hight incidence of MS amongst the inland people...

      It seems like cultures like Japan and the Inuit of Canada that have mostly fish diets don't have
much MS.  Of course the countries around the equator also have very litttle MS so perhaps heat tolerance,
and low fat diets are linked?

          When I think of lactose intolerance and where it exists, it seems to be in places without MS.

          I was a very big milk drinker for my childhood and teen years.... perhaps I'll cut that out...

          Some data that has made me question this, is from Australia: Apparently there are 7 times more people with MS in the deep south(further from the equator) than in the north. This is great evidence for
Vitamin D, or ultraviolet, but the fact that these people have the same diet, and same medical system, seems to negate the diet of equatorial people as a factor?

Foreign Body Rejection

It appears that when women with MS get pregnant their MS symptoms take a holiday. In order to raise a foreign being within their bodies, women's immune systems change. Their ability to reject foreign bodies is temporarily turned off.
    This suggests to me that MS is an ongoing attempt by the body to reject some kind of toxin. Or the body got so good at rejecting toxins that, even after they were gone, it keeps rejecting.

      Sometimes I think about it as an inflamed tissue, like the red that surrounds a sliver...but other times I think of it as 'the sliver is gone but the inflammation still goes on...'

     Probably MS is a name for a number of illnesses and causes, and the cytokine ecology of each person is a little different... This all makes for a complex thing to describe and deal with... 


A vitamin D/Ultraviolet Theory

      This one creates great contraversy, especially amongst those who live in sunny areas.
MS is weird because it's becoming clear that while heat makes things much worse in terms of symptoms,
(I go nearly blind) sunlight seems to help somehow. There are definitely a lot fewer people with MS closer to the equator, and it's not just about poor health care in tropical areas. A study that made headlines
in summer 2003 suggested that animals with EAE could even be cured with sunlight.
       It's unclear whether it's vitamin D or ultraviolet that is beneficial, just taking vitamin D in pill form
may not be enough.
       It's unclear as to whether eskimos don't get much ms because of genetics, or because they eat a lot of fish that's high in vitamin D.


         I spend a lot of time in my unheated pool, in cold water, basking in the sun in summer.

An Iron Deposit theory

           I read an interesing paper , that suggest that the reason interferon helps people with MS is that
 "toxic effect of pathologic iron deposits found in gray-matter structures of MS patients."
are minimized. Another article proclaiming it as 'first time discovery'...

        Don't know.


Low Dose Naltrexone
               This isn't really a theory of the week. It's stuck in my head for several months, and now  I've
made a seperate page of reading on LDN and MS ...

               Now granted, this is coming from left field, as a friend who's been studying immunology for 20
years hadn't ever heard of a relationship between endorphins and the immune system.
          But, when solving problems, you can proceed incrementally, or make intuitive leaps and test them.  I'd like to believe that incrementalism is the more efficient way, but I don't. Intuitions (and the ability to test them using rigour) are what humans have over computers in solving problems.

        Bihari has made such a leap. Let's test it.
               
             
 


Medical Imaging

     Medical Imaging seems like an important future direction here. Could technologies be evolved that are capable of scanning the molecules of the body for impurities? We've only had the ability to use MRI scans to detect MS for a short time, how long are we from a hand-held imaging device that can give daily feedback on the state of the immune system etc. ??



Notes and discussion on handling it until its cured...


          One piece of advice I've heard from patients is 'don't think about it much'...so this page will only get updated once in a while...a general minimalization, 'like being allergic to seafood or something' is in order the rest of the time.
           
             Positive thinking seems to be pretty key. When I improvise on the piano, I do get the odd wave of weakness, and I think this is when my improvisations are too dark and negative sounding, or lacking in direction. Perhaps these are 'cascading seratonin' chemicals that cause other chemicals to react. The fact that every thought is a chemical reaction seems very important, and not really understood... 
     Simply bringing ambitiousness of any design back a notch in every creative act seems to solve dark feelings...ie: don't work on such hard problems!
           
         
          Heat tolerance is big for me, I can't handle summer any more....you???
Lately I haven't been sleeping too well, is this MS or the fact I quit smoking? The other day I got horrible hip pain for a week. It was like all the anxiety in my body went to my hip and finally culminated in a big zit that burst there...
         : )     Dont' ask me...

  I guess my biggest question is 'how do I handle my immune system'. One person tells me to take echinecea and build it up, and another says I should increase the amount of stress in my life, and never let my immune system get so strong that it attacks itself... what do you think?

What's your experience with MS. Check out the MS discussion forum on this site... 


: