This Is MS Multiple Sclerosis Community: Knowledge & Support

I try to stay in denial despite my gut instinct, I try to trick myself, it helps with peace of mind, HOPE, etc. This post has shaken me. I am sure I've not done as much research in to MS as most of you have, but I have spent A LOT of time reading research papers etc. It always comes down to the fact that no one really knows the pathology of MS. I became very alarmed when I read a research abstract a few months back that cited cases where they found neurodegeneration before the inflammation process in post-mortem human samples. As the abstract said, if this is the case in all so-called cases of MS, then the implications are severe, and astounding, because most/all research is based on an actual, induced, demyelinating auto-immune disease in mice.

MS has to be one of the few diseases left where they really don't know the cause, isn't it?? I mean considering that there are so many people afflicted with MS.

I wish there was a way to get to researchers and help them to think outside of the box, some how? If only researchers worked together and shared information.

Viper,



This is pretty much what Dr. P.O. Behan said in his Pathogenesis of MS paper from a couple of years ago. And Drs Prineas and Barrett performed that autopsy a year or so ago within 12 hours of that 17 year-old teenage girl who died from a rare severe exacerbation of her MS....and found no evidence of the immune system doing the severe damage to her brain's myelin!!

What really bothers me is that despite the mounting evidence that the immune system isn't the originating cause of MS, we continue to see the vast majority of research and funding still locked in medications that try to severely alter the MS patients' immune system. And as long as this continues, we'll have this same conversation 5 years from now!!

Harry

HarryZ,

That is exactly my worst nightmare. Why is it that researchers insist on persisting with the autoimmune theory? What is to gain from this? Surely there are people out there that really want to figure this out, who have no ties to large Pharma Co's? Tell me there are?!

Although my MS hasn't left me with any resitual symptoms, I can't be sure of what it is doing to me silently and then of course in the future. I take Rebif, but I really wonder what good I am doing. Even if my MRI is better, it probably doesn't mean that I protecting myself. For $17K a year I should be getting something. Is it futile? Will greed always prevail?

I apologize for the negative attitude, but this is a rather senstive subject for me, and I am sure I am not the only one who feels this way.

Brock

Brock,

I can understand your frustration. I have been asking the same questions that you have on many MS forums and some people accuse me of being a negative person because of it. I've followed MS research for over 40 years and nothing has changed very much in all that time.

The vast majority of MS research is driven my the big pharmas. They make millions on the immune system altering drugs and continue to place their investment dollars in this area of research. The latest path is with monoclonal antibodies (ie Tysabri) which can really shake-up the immune system but the potential revenue is astounding. So guess where the current and future focus will remain?

There are other researchers in the universities and medical centers who are looking in other areas but compared to big pharma these people have little in the way of resources and support.

I wish I could be more encouraging for you but those are the facts.

Harry

It's quite interesting to look back at MS conferences and the presentations. The UK holds an annual conference called MS Frontiers. The 2004 conference had two presentations relevant to this thread:

'Everything stops EAE, nothing stops MS'

'Is MS a neurodegenerative disease'

I've not seen the presentations and wil seek to locate them.


I think the first rings a bell with all of us, and I believe is the case because EAE is a model of an inflammatory disease. Stopping inflammation in this model stops the disease. But it doesn't appear to be a good model for MS if MS is a neuro-degenerative disease. I've seen references to a chronic EAE model but most research is undertaken on the acute EAE model.

The second presentation was by Professor Bruce Trapp. I think he was the researcher who showed that it was the damage to nerve fibres (axons) that caused disability rather than the myelin.


So it appears that we have a disease that might start with neuro-degeneration. For some, once the process kicks in, the immune systems gets involved causing inflammation and more damage to myelin / axons (or perhaps protecting them). Dampening down the immune system response can improve the situation, but the underlying neuro-degeneration continues.

In some cases e.g. PPMS the immune system (for whatever reason) does not get so heavily involved and inflammation is less of an issue (although it is present). For SP, which starts off as RR, perhaps the immune system cannot keep up with the underlying neuro-degeneration. Complicating factors are the speed of the neuro-degeneration, which seems to vary, and also the age of on-set.

This of course is based on my observations and research and could be totally wrong. But, if this disease is a neuro-degenerative disease, then all the focus on the BBB, immune system response etc will never address the real disease.

The only options (if MS if a neuro-degenerative disease) is to find the culprit (virus / bacteria etc) and deal with it, or to protect the nerves from dying off.

I think someone said on this thread that cracking PP MS would benefit us all. I'd be interested in how the Rituxan trials work out for PPMS / SP MS.

Although some of the research I have posted recently has suggested that this disease is more than a disease of myelin, and is more liekly a global disease of the CNS. At least such research might point to other avenues for therapies.

I read a presentation by Professor Alan Thompson who is an adviser to the UK MS society. I can't recall his exact words but he suggested that tackling relapses / inflammation would not be enough. Neuro-protection was needed and to stimulate new nerve fibres.

I know that some have moaned about my complaining of the lack of research progess (I was grumpy before I got MS), but last night I went on Google Earth and can see the car in my drive from XXXX miles away. Amazing. BUT THOSE BLOODY RESEARCHERS CAN'T WORK OUT THIS DISEASE WHEN THEY'VE GOT AN MS BRAIN ON A PLATE IN FRONT OF THEM. AAH (end of rant)

Ian

Harry and Ian,

Even though all of this talk may be perceived as a negative. These questions MUST be asked . These questions have to not only be asked, but leave the forums and be heard to larger bodies of people. MS Conferences, doctors (like that does any good), friends, family, etc. When I disclose to people that I know, that I have MS, they seem to think everything is ok "Oh, well at least thats treatable now", my reply is "Is it? I am not so sure about that", then I explain my ideas. They don't have any idea about the people who continue to suffer from this disease. They see me and assume is everything is ok. I even fool my self sometimes, but its not. I am not the only person who has been affected by MS.

As long as people think everything is being handled, Big Pharma will keep on doing what they are doing, making billions of dollars off people for drugs that really don't have any more efficacy than the placebo effect. As if that is not enough, every d*mn time they have some other type of possible treatment, they always say "This may be a new treatment used in conjunction with Interferon Beta 1a's". How obvious is that??????

Why does the National MS Society still side with the Autoimmune theory? Granted, they do say "MS is to be an autoimmune disease that affects the central nervous system (CNS)." But do they say this because they have to say something? Or is this really their stance? Do they have hidden ties with Pharma? Why don't they mention the other possibility?

I know I am not going to sit idle and at least not voice my concerns about this subject. We all have the greatest stake of all, our lives.

Thankfully there are a few gov't sponsered studies that address some of these fundamental issues. That means, to no surprise on my part, that any major, beneficial findings for MS will come from the gov't, US or abroad, and perhaps a University, although less likely due to possible bias from contributions from large Pharmas (yeah, I know, sounds like a conspiracy theory, but don't put it past them). See link (you may have already seen this before?).

http://grants.nih.gov/grants/guide/pa-files/PAS-05-002.html

Hi all
Yesterday I received a letter from my neurologist "disowning" me because I "chose not to follow his advice". Avonex is an inteferin and after 14 or 15 months it did nothing anymore- did not extend my energy or help my pathetic gait at all. So I quit using it about 6 or 7 weeks ago. I am still improving withiout it and have been on abx for almost 17 months. See www.CPn Help.org for more.

My MRI is done and I should hear something of the results by Wed. I will post here.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Maybe I should consider trying to go on abx. The question is. Do you have take those for the rest of your life? Or until a cure is found? The other problem, of course, is finding a doctor in the U.S. that will prescribe according to the regimen that some are following.

Still though, I have reservations about "MS" being caused by a bacteria or virus. If it was, why wouldn't a wife/husband/partner get it also? How come its not transferable? At some point it would have to be. Right?

Hi viper!

Thankfully all the evidence suggests that partners and spouses are not more susceptible to the environmental factor that is undoubtedly a factor in the disease. However genetic susceptibility IS a factor since monozygotic twins have a 30% chance of getting the MS of their sibling and children have a 2% chance of getting the MS of their parent. These probabilities are higher than that of the general population which is commonly described as 1 in 1000 although the Lancet in 2002 reported that 1 in 400 people will succumb to MS lesion development in their lifetime with or without clinical symptoms. There is a case to be made that an infection causes the disease in genetically susceptible people. Perhaps or indeed probably other factors are also to be considered such as insufficient vitamin d. I like to think that people with MS have genes which predispose them to a sort of allergic reaction to the bacteria or virus in play. As antibiotics are generally safe and cheap I would certainly give them a go. It's not as if there are any effective alternatives.

Good point. There aren't really any other effective treatments. There is no blood test for CPN? There is no way you can find out if you have this?

Viper,



I better control myself and not get too excited when mention of the NMSS surfaces!!

To understand the NMSS's position is to get a glimpse on how this organization operates. Without going into any detail, the NMSS is a money making machine that employs over 50 employees that earn over $ 50,000.00 a year (and that was 5 years ago!) And that's the "top end" of the organization. They have a huge office in downtown Manhattan (one can imagine the cost of operating that) and I believe the last figure I heard was that 20% of their donations went to operate their administration. Montel Williams was so upset at how much they spent on admin that he refuses to support the organization in any way and that's why he started his own foundation.

I know some people that used to work as volunteers for this organization and they left it because of way they handle their money and quickly isolate anyone who questions them on this.

And they are supported big time by the 4 pharmas who make the CRABs...just look at the advertising in their publications.

That's enough said...as you can see, I'm not exactly an admirer of this organization.

Harry

Just as I had figured. Not a surprise to me at all. Always boils down to money. That is very disappointing, that is similar in the way that the United Way operates, and I imagine they are not the only ones either.

Of all of the people who post frequently on thisisms.com, does anyone actually have any sort of biological research background? I am aware of Dr. Wheldon, but are there any others? Does anyone have access to resources that have the ability to dig in to this disease with out bias, Professors? A long shot question, but had to ask.

Brock

Brock,

We are all being treated under the assumption that MS is caused by chlamydia pneumoniae, but only in people genetically predisposed the having the disease, which is why wives/husbands/partners do not by and large also contract the same disease. Since CPn also causes many other diseases, one's partner may well go down with one of those. On the other hand they may well be able to fight off the pathogen and never go down with anything. You can find out more abut it here:

http://www.CPn Help.org/?q=node/71

http://www.CPn Help.org/?q=treatment

http://www.CPn Help.org/?q=node/70

http://www.davidwheldon.co.uk/ms-treatment.html

http://www.davidwheldon.co.uk/updates.html

A big problem of course, is finding a doctor who will treat you. I am married to one, but I noticed that you live in Missouri. Depending on which part, that isn't a million mils from Nashville, where all this began. Here is a Vanderbilt university page:

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Vanderbilt has the best equipment for testing for the pathogen par non, but where I was tested in the UK I was found to be diagnostically negative. I was told by my neurologist that there was nothing that could be done, my disease being so aggressively progressive. He totally disbelieves an infective element in MS. My husband, with his early training in neuro-pathology at Oxford, under David Oppenheim, does not, so he decided to treat me. He proved to be right. I am now on intermittent therapy, two weeks every two months, soon to be three months, then even longer. This is to guard against reinfection. I feel no different when on treatment and when not.

And don't anyone dare say that antibiotics are highjacking the forum. We are only answering questions, after all.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

And now for some annoying optimism (I don't have that research background you're asking about)...I thought I'd post this article I just saw in PubMed. It confirms that there are researchers out there who are looking at MS based on all the latest findings and trying to piece things together. They may not represent the majority of researchers, but I think this is fast becoming a mainstream view of MS.



Insights into the molecular pathogenesis of progression in multiple sclerosis: potential implications for future therapies.

Arch Neurol. 2006 Jan;63(1):25-33.
Imitola J, Chitnis T, Khoury SJ.
Center for Neurologic Diseases and Partners Multiple Sclerosis Center, Department of Neurology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Despite recent advances in the diagnosis and treatment of multiple sclerosis, we still lack a consensus regarding the causes, pathogenesis, and mechanisms of disease progression.

Current evidence indicates that multiple sclerosis is an inflammatory neurodegenerative disorder in which both adaptive and innate immunity play important roles in initiation and maintenance of the disease. Recent evidence supports the notion of molecular pathologic abnormalities beyond the plaques and dysfunction of neurons in normal appearing areas, in addition to the multifocal demyelination and axonal loss, as important features that may underlie early reversible changes in the disease. Chronic failure of remyelination, axonal regeneration, and neuronal dysfunction may contribute to disease progression.

This article discusses the emerging molecular evidence for the progression of multiple sclerosis with particular focus on alterations in the local central nervous system microenvironment of neural and glial cells. The molecular pathways leading to structural and functional neurodegeneration and those that prevent regeneration need to be identified in order to design new therapeutic strategies that can halt or even reverse disease progression.

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