Do you think there are different "strains" of ms?

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Do you think there are different "strains" of ms?

Postby elly » Thu Jun 21, 2007 9:19 pm

Hi Everyone,

I was thinking about the great variations in how ms affects and progresses in different people and i was wondering if perhaps there could be different types or strains of ms.

Has anyone ever heard anything like this?
My neuro and gp's favourite answers are "i don't know" ms is a mystery :roll:

I often wonder what it is that makes one persons ms very benign and another persons will progress rapidly.

Any thoughts?

Thanks

Elly
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Postby robbie » Fri Jun 22, 2007 8:03 am

'Benign' MS patients should be warned, study says
Updated Tue. Feb. 13 2007 8:19 AM ET

Canadian Press

TORONTO -- People who have had multiple sclerosis for a decade with few disabling symptoms are often told they have a mild form of the disease and will continue to do well. But a Canadian study has found that so-called "benign MS" doesn't always remain benign.

In fact, researchers found that half of those patients said to have benign MS 10 years after initial diagnosis saw their disease actually progress over the next decade, including 20 per cent who ended up needing a cane or other assistive device to walk.

Study co-author Dr. Virginia Devonshire, head of the University of British Columbia Hospital MS Clinic, said she and her fellow researchers were somewhat surprised at the finding, which was based on analysis of a detailed database of 169 benign MS patients followed over 20 years.

"We really did think that we would be able to say that there was a group of people who had certain symptoms from the beginning who did well for a period of time, that they were always going to do well, that you could feel comfortable telling them that," Devonshire said Monday from Vancouver.

"Unfortunately, that's not the case."

"Nobody wants to find out 10 years later that they've got disability and impairment. And . . . we can't always tell somebody because they have certain symptoms at the beginning or because they've gone so long without disability that they're always going to go without disability, and therefore don't need treatment early on."

Devonshire said the study - published in Tuesday's issue of the journal Neurology - suggests that patients who are told they have benign MS still must be regularly assessed to see if subtle neurological changes that might herald later progression of the disease could be picked up early.

Multiple sclerosis is an auto-immune disease that attacks the protective covering - called myelin - of the brain and spinal cord, causing inflammation and often destroying the myelin in patches. An estimated 55,000 to 75,000 Canadians have the disease, 75 per cent of them women. Canada has one of the highest prevalence rates of MS in the world.

About 10 to 15 per cent of cases are considered benign, said Marianne Chilco, a spokeswoman for the Multiple Sclerosis Society of Canada.

Symptoms include numbness or tingling in the hands and feet, feeling off-balance, clumsiness and visual and cognitive problems. Most patients experience what's known as relapsing and remitting MS, in which they will have an attack of symptoms that will last days to weeks. "Then the patient gets better, fully or partially," Devonshire said.

Or, the patient seems to get better, at least on the surface.

"In between attacks, during remission - which is not a true remission - there are no new symptoms, but in fact if we watch an MRI in this 'remission' phase, we see new inflammation coming and going all the time," she said. (MRIs can pick up lesions on brain and spinal tissue.)

During the first 10 years, attacks come and go, the person recovers and there seems to be little residual disability, she explained. "But we think between attacks, there are little bits of damage occurring in the brain and spinal cord all the time. And after 15, 20 years, all those bits of damage add up."

"It's like the tip of the iceberg: suddenly, then, you see the disability and impairment."

Devonshire said doctors don't know whether benign MS patients would benefit from starting treatment with immune-modulating medications aimed at limiting neurological damage - drugs that many patients are loathe to begin because they are administered by injection and are expensive.

That's something only further study can determine, she said.

In an editorial accompanying the study, Dr. Sean Pittock said that if doctors had an effective, safe and inexpensive oral medication for MS patients, "few would argue against the 'treat-all' approach." However, disease-modulating agents (DMAs) are expensive and have side-effects that can cause skin reactions and flu-like symptoms, and their long-term effects are unknown, he noted.

"There are no data on the advisability of commencing DMA in MS patients who have experienced a favourable course over many years and lack clinical or radiologic (MRI) evidence of recent deterioration," writes Pittock of the department of neurology, laboratory medicine and pathology at the Mayo Clinic in Rochester, Minn.

"A 'watchful waiting' approach with regular clinical and MRI monitoring before initiating treatment may be a preferable approach for some patients."

Devonshire and the MS Society both urge patients who have been told their disease is benign to maintain regular contact with their MS centre and neurologist for ongoing evaluation of their condition.

"But I think the bigger message is for physicians," Devonshire said. "I think physicians have to be cautious about telling people they have benign MS. I think it's reasonable to say: 'You're doing well now, but we can't predict the future and we must consider all the options.' "



Had ms for over 19 years now.
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Postby Muu » Sat Jun 23, 2007 2:40 pm

This sounds v much like me, altho I always thought benign ms occurred when a person had a relapse followed by approx a decade symptom free.

My first episode, altho it wasn't recognised as such, was when i had ON aged 20. Although I had some symptoms in the 18 years that followed there were mild and whilst ms was suspected there was no firm dx until it slowly progressed to SPMS and I was given a conclusive dx aged 40. It has been indicated (altho neuros are wary of making these sorts of statements) that based on the length of time I have had ms and the slow pace at which it has progressed it bodes well. Having seen the results of my recent mri and the crop of lesions it revealled i can see that damage and lesions have been occurring without me suffering significant episodes or relapses. Seeing it was quite depressing. Nontheless i am one of the lucky ones - 22 years of ms and only a limp and having to wear an ankle support to help my walking.

I don't know why my ms progressed slowly - i don't think i can really take much credit for it. I had no ms drugs during that time - and now with spms there are only drug trial drugs available in the uk and one has to jump through various hoops to get onto the trials. As such the question of whether to prescribe even to those with "benign ms" is a pertinent one. Would drugs have slowed down progression further?
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Re: Do you think there are different "strains" of

Postby Lyon » Sat Jun 23, 2007 10:30 pm

oo
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Postby robbie » Sun Jun 24, 2007 6:04 am

Hi Muu , you are a perfect example of why MS is a gold mine for drug makers. Let say you had been diagnosed a little later when crabs were first approved, as what seems standard procedure you would have had your choise of them and we must hurry and get the ms before it gets to bad. So you take this drug for many many years because it's doing such a great job, what is it roughly $21,000 a year and your a sucess story in the eyes of us all.

You took no drugs and your great as far as ms standards go over 20 years later, now times this by the probable 100's of thousands or millions that would follow this same path as you and me (for the first 10 anyway) and you can see the picture i see.$$$$$ You are an inspiration to everyone here that ms is just one of it's own, drugs or no drugs..
Had ms for over 19 years now.
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Postby Lyon » Sun Jun 24, 2007 7:41 am

oo
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Postby HarryZ » Sun Jun 24, 2007 1:09 pm

Multiple sclerosis is an auto-immune disease that attacks the protective covering - called myelin - of the brain and spinal cord, causing inflammation and often destroying the myelin in patches.


According to the reporter who wrote this article, I'm glad to hear that they have solved the mystery of MS and have proven that it is indeed an autoimmune disease!! They have done something that nobody else has been able to accomplish in 50 years.

I sure wish these people would check out their facts properly before publishing this information. No wonder there is so much confusion about the disease.

Harry
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Postby Lyon » Sun Jun 24, 2007 1:50 pm

oo
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Postby HarryZ » Sun Jun 24, 2007 6:30 pm

What do you require as proof?


In the world of medicine, you have to be able to prove a theory by offering scientific facts that can be duplicated by others. Your work has to be peer reviewed as well and the scientists involved must be able to defend their work.

When it comes to MS, nobody so far has been able to prove that it is an autoimmune disease. Heck, they don't even know what causes it yet so how can anyone say that it's autoimmune? The scientists have been working on this problem for decades and still haven't come up with the answer.

If you read articles by prominent MS researchers, you will hear terms like "it is thought to be autoimmune" or "it may be autoimmune etc etc but none of these people will ever say that "MS is an autoimmune disease". And as we have seen in the past year or so, work done by docs such as Barrett and Prineas are starting to discover that there are other mechanisms involved in MS where the immune system has not been involved at all. And most recently in articles in this forum, we see that the absence of certain histamine receptors may contribute to a more severe level of MS in patients.

I suppose I'm a bit more sensitive to others when I see reporters coming out like they did in this article and making the statement "MS is an autoimmune disease" because to now, this is not correct.

Harry
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Postby Muu » Mon Jun 25, 2007 1:43 am

Hi Robbie - nice of you to call me an inspiration. It's an improvement to some of the things i've been called! (joke) I wouldn't want anything that i said to suggest that i am anti drug. Believe me if there were drugs available and the side effects were not too severe i would be doing my best to get my hands on them. There are also many people who do appear to have benefited from some of the available regimes. I think this all goes back to the original question posed on whether there are differing"strains" of ms some being more severe than others. One alternative way of looking at it, that i prefer, is that being as individual as we all are it's more of an issue of how our bodies react to the triggers. It brings to mind an outbreak of chicken pox at school when i was a kid - some children really suffered covered from head to foot whereas others escaped with a spot or two. Probably the same viral infection but it affected people differently. Did it become diluted along the way?
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Postby Lyon » Mon Jun 25, 2007 6:10 am

oo
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Postby HarryZ » Mon Jun 25, 2007 7:57 am

Bob,

Seriously, I don't know if it's been known for some time and I've only discovered it recently or if it's actually been discovered recently that EVERYONE has autoreactive T cells. This is the kind of thing which inarguably could/should take the wind out of the "MS is not autoimmune" camp because it is something which can be inarguably proven.


The fact that one's immune system reacts to inflammation around myelin does NOT mean the particular affliction is "an autoimmune disease". The immune system is simply reacting to this inflammation and is doing something it is designed to do....go after whatever is causing the damage. In the case of MS, the immune system ends up causing even more problems in its attempt to "fix" the situation.

Unfortunately, the generic term "autoimmune disease" has been applied to MS for many years even though nobody has ever found the actual cause of the disease. This "label" certainly hasn't helped find any meaningful treatment let alone a cure for MS.

If EVERYONE, not just people with MS, have autoreactive T cells, that means that self reactivity (autoimmunity) is the normal human state and NOT regulating those autoreactive T cells is the dysfunction known as MS. In other words, MS is/would be definately autoimmune because everyone is autoimmune and people with MS don't regulate their autoimmunity correctly.


I'm afraid I just can't agree with your logic on this. Again,the immune system of a MS patient is doing exactly what it was designed to do...detect and go after the problem...in the case of MS patients, this is inflammation around the myelin. Having MS doesn't, in my opinion, doesn't make any difference at all in this mechanism.

Unfortunately, there are a lot of publications and articles out there that refer to MS as an "autoimmune disease". It is easy to paint this disease with the same brush but that doesn't make it scientifically correct. I've asked my wife's neurologist this same question and his reply at the time...we really don't know if MS is autoimmune or not but we don't have any other explanations so far. The good news is that after years and years of tunnel vision with this disease, they are starting to look into other areas of the cause. Perhaps the next 10 years of research will give us far better results than the previous 50 years of failure.

Harry
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Postby Lyon » Mon Jun 25, 2007 8:23 am

oo
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Postby HarryZ » Mon Jun 25, 2007 9:41 am

Lyon wrote:No, seriously Harry, if you want to sneak away from this "not autoimmune" thing graciously we can still be buddies and I'll scour the earth in order to find something else we can argue about.


LOL....what would ThisIsMs be without differences of opinion? The big difference here is that most times you can express these differences and not have to worry about someone coming back and making personal attacks on you.

Come to think of it, how do you say potato and tomato?


The same way you do but likely with less "twang" :D

I'm going to be heading towards your neck of the woods later today. My 15 year old son found a Camaro he likes near Port Huron/Sarnia and considering it's supposed to be sunny and 90 (Farenheit) it seems like a good day to take a ride in the convertible.


Great convertible wx. We usually try to get to Port Huron once a year and do a little shopping...especially with the Canadian dollar worth about .94 US these days. I can remember growing up in Windsor and heading across the river to Detroit often when the CA $ was about .05 more than its US counterpart.

Take care.

Harry
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Postby Lyon » Mon Jun 25, 2007 10:02 am

oo
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