why is there no cure for ms???

[johnthesider]

i know from dr and more dr that they dont know how some one can or does get ms....
but are they studying patients with ms and trying to figure out how we get it?? i know theres no cure and that is because they dont know how we get it..right?
how about we the ms victims do some type of serve on how were we living prior to ms symptoms,or our diets,or if we all share or suffer from something in common or medicines we all take..  if we all suffer from something in common .. and i cant figure out is how us humans can land on the moon build bio weapons atom bombs,electricity i think u get the point but no idea how to fix us!!!!!

[sllowe]

Polly,
The initial question asked was regarding MS, the cure and why there isn't one. Thank you for posting what you are doing for yourself even though you do not have MS. However, doing so to fully recover from something like MS that is not diagnosed is misleading here simply because MS is not caused by diet or fillings.

Johnthesider,
Great question, one that good input was given. I'll only add that because there is not "one" specific known cause identified, much goes into how to stop it, i.e., disease therapy.

We have options in medicine, and some work a bit different than others -- another benefit to MSers, because if there is a varied cause, it takes varied therapy to try to stop it.

Thanks for trusting us to thoughts.
-Shell

[pally10101]

I should also say that I never had a full blown positive lyme result, though that in of itself is a major controversial subject.  I essentially tried treating lyme first and asking questions later even though I wasn't sure that I ever had it (I think I did as a kid at one point a very long time ago).  I did all this because I was desperate to stop this from getting as bad as it has gotten.  Either way, I still have a lot of hope left that this thing like many health problems is beatable.

I'm a software developer by trade so I'm sort of treating this like a programming problem whereas with enough time and effort, I can figure it out and fix it. That philosophy has never failed me sofar.

[pally10101]

Basically I believed my case to be lyme for quite awhile despite my neurologist insistence of 'probable' ms. My other more naturopathic doctor still suspects lyme but I'm starting to think otherwise.  Long story short, I'm undiagnosed. Though to me, that doesn't matter. My main goal is to get well despite whatever the diagnosis.  Odly enough, MS and Lyme have almost identical symptom sets.

[doublevision1]

I'm confused......you say you intend to be one of the ones who recover fully from MS, yet in the Lyme community you say that you dont have MS nd that your symptoms are due to unconfirmed Lyme disease.  In the above post you make no mention of Lyme.

?

[pally10101]

You could always try what I'm doing - the shotgun approach.

People have recovered from MS before, fully and permanently.  It's often not publicized when it happens for whatever reason that may be but it does happen.  I intend to be another one of those people.

Essentially the goal is to stop whatever is screwing up the blood brain barrier, and then to repair it so that nothing else harmful can get into the brain and cause more damage (lesions).

Excessive but I don't care - here's what I've done sofar -
- complete overhaul of my diet - following most popular MS diet research
- vitamin D, E, and cod liver oil every day.
- replaced my bed which was treated with potentially neurotoxic flame retardants
- scheduled dentist apts to remove all of my 5 amalgam fillings in my teeth.
- ruled out all other potential hidden causes of the lesions - namely lyme.

I'll stop all this madness when I'm 90-100% recovered.
My CSF was negative so I'm extra suspicious that my situation may be different than the average.

I'm not diagnosed but I'm not wasting any time.  Incurable in my opinion is a label people use so they can remain comfortable with illness.  I say F that. I have 1 lesion or so (second one vanished since first MRI) and plenty of symptoms - namely my fast weakening and coordination of my legs.  I refuse to sit by and let this thing get any worse without doing what I can on my own to fix it. Sofar no doctor yet has given me any of the information that I've found via my own research - the only thing I've gotten from all the doctors is blood tests, antidepressants, and a wait-and-see approach.

Accept nothing and affirm with certainty that you will recover from this.  MS got switched on somehow - all we gotta do is turn it back off.  It's your life dammit, seize it back.

[doublevision1]

sorry, the URL above doesn't stand out very well.  It's:

http://clinicaltrials.gov/ct2/results?term=multiple+sclerosis&recr=Open

[doublevision1]

.....and you can also go to http://clinicaltrials.gov/ct2/results?term=multiple+sclerosis&recr=Open for a list of open and completed clinical studies regarding MS, everything from various drugs to treat MS symptoms or disease course, studies of the impact of Vitamin D and Vitamin A on MS, effectiveness of cognitive behavioural therapy on MS pain, attempts to remyelinate neurons, etc etc etc.  

A quick perusal of this list will give you a good sense of the MS research that is happening around the world, the wide range of theories on why it occurs as well as the broad scope of potential treatments being tested.

[doublevision1]

The Accelerated Cure Project that I and some other members here participate in is another great way in which we can contribute to the body of knowledge.  There are currently ten repository sites across the US where subjects donate blood samples.  I live in Canada but visited the NYC site when I was on vacation there a few years ago.  It was just a few hours of my time plus completing folllow up questionnaires from time to time.  They also require samples from relatives of patients when they can get them.

From the project website:

"One of ACP’s goals is to remove the bottlenecks that slow research into better understanding the causes and mechanisms of MS and related disorders. One area of focus includes providing researchers with the high-quality and well-annotated biospecimens they need to conduct their research, and then encouraging them to share those relevant study findings with the rest of the MS research community.

This is accomplished through our ACP Repository—a large-scale collection of biological samples and data from people with multiple sclerosis, selected demyelinating diseases, and unaffected controls.

The Repository not only provides much-needed samples and data to researchers studying MS and related neurological diseases, but also aggregates the results from all of these studies so that they can be analyzed collectively—leading to new findings and breakthroughs."

Here's a link to a map of the ten sites in the US:

http://www.acceleratedcure.org/impact/repository/collectionsites

[TLC_31]

"Are they studying patients with ms and trying to figure out how we get it?" ... As immisceo wrote, many different groups are working on our behalf. You can help them in many ways. In my case, aside from signing up for the geography-specific Pacific Northwest MS Registry, I participate twice yearly in the surveys of the North American Research Committee on Multiple Sclerosis.

http://narcoms.org/becomingaparticipant

[immisceo]

MS is a very vibrant area of research. I'm on a drug trial, in an academic Vitamin D study, and several potential biomarker studies (both academic and pharmaceutical). At many times, information was gathered on my previous health history, family medical health histories, and things like the location from the equator I was raised at. When I was diagnosed, I said essentially said to my hospital 'Whadya got. I'll participate!' Apparently not a lot of us do that.

Trust me, they are going at this problem hammer and tongs (research scientists, academics, pharmaceutical companies, public health bodies, grant-giving institutions). It could be that the different versions of MS may one day be considered separate diseases with specific etiologies (much like Neuromyelitis Optica was separated out a few years ago). But there's no smoking gun it seems. An intractable combination of environment, heredity, and possible viral exposure makes pinning it down a challenge.

To address another part of your question, even if they knew for absolute certain what causes it, we would still be many steps and years away from developing a true cure. Properly formed, reproducible studies have to be conducted, and approval from various bodies has to be obtained, etc.

For now, I feel quite optimistic about MS being such a hot area for research.
Of course, it's not yet resulted in the knock-out punch we'd all love, but it is no longer a disease (in most cases) of 'Diagnose, and adios'. And it was. Not that long ago. We've every reason to be hopeful. In fact, I was listening to a podcast (by doctors, for med students) just this past week that listed potential progress in nailing down biomarkers (PeerView Neurology CME/CNE/CPE Podcast, March 25 episode. I'd recommend the podcast to anyone on here). It's happening, but science doesn't happen over night.

[Lulu54]

Hi - I haven't been around this week and I don't think we've met,yet.  You are asking the million dollar question - we know there is more than one type of MS, and probably more than one cause.  Please know they are looking for the cause and also ways to repair the damage that has been done to our myelin.  Just keep belieiving those discoveries will come sooner rather than later.
best, laura