Benign MS....or not?

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Benign MS....or not?

Postby treez » Tue Aug 17, 2004 10:42 am

To All,

How do they define benign MS? Where do they draw the line between say not-very-active RRMS and benign. There seems to be as many different definitions as there are web sites. If a person had few exacerbations that were as many as 18 months apart and totally recovered, would that be considered benign? Add an ABC treatment to that...hopefully fewer and/or farther between exacerbations. Go off the ABC to see what happens....I DON'T THINK SO!

Your thoughts all?

Treez....aka Steve
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Postby Felly » Tue Aug 17, 2004 1:34 pm

Depends what Doctor you ask! My own neuro says I have mild but active MS, the area neurologist for subscribing ABCrs in the UK says it is benign and refused to prescribe. He believed my MS was unlikely to change after so long and it would be silly to treat. In his words the drugs were for 'really sick people'.

At the time I was just over 15 year with MS and this is meant to be the benchmark for a benign course. I have had about 5-6 relapses in 15 years but only two that caused any major symptom - iritis at 23 (form of optic neuritis) and L'hermittes at 36. I have no residual symptoms. A relapse means slowing down but not stopping work and lasts about two -four weeks. Until three years ago they didn't even last the weekend.

I met a woman the other week, married to my boyfriend's Great Uncle. She was diagnosed with MS at 25 and is now 70. She has had no attacks in that whole time. Nothing. Has she got benign MS? I wonder if she has MS at all. At the time she was diagnosed a hot bath was the modus operandi. We now know that hot baths don't just predict MS and I think she was misdiagnosed. How many people are in this category and are therefore labelled benign when it is a misdiagnosis.

Also, various long term studies have recently shown that so called benign MS occurs in much smaller population than once thought, and only 10% of this small population will remain benign at 30 years.

My guess is that in many of the benign cases the person dies before the MS becomes progressive.

I don't like the term benign, it gives people a false sense of security and you can't take anything for granted with MS.

I also don't like boxes - the MS I have is just whatever it is right now. I can't predict the future so I won't even bother trying. People lose so much by not living in the present. Not just people with MS but those with other illnesses, financial worries, the lonely etc etc.

I finally got the drug by kicking up a huge fuss and I intend staying until something better comes along.

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Postby Jayjonat » Mon Aug 23, 2004 12:19 pm

Great question. My story is that I was misdiagnosed 27 yrs ago, had RRMS symptoms, but neuro came up with encehphalitis based on all my tests showing negative. Flash forward to January 2004, more symptoms, and a new diagnosis of RRMS based on my MRI results. So, did I have benign MS for 27 years? Maybe so, says my neurologist. Anyway, I didn't want to roll the dice on another incident, so decided to go on Copaxone, will prob. switch to Antegren when it comes out. And I'm intrigued by the Aimspro (goat serum) stories, will be watching closely how that develops.
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No such thing as "Benign"?

Postby treez » Mon Aug 23, 2004 2:49 pm

Interesting story, makes one think there may be no such thing as "benign. To go 27 years clean of relapses or symptoms. This story raises LOTS of research questions I would think. Not that there is an answer but you have to wonder what was different for 27 years that just recently changed?

I too am anxious to see how the Antegren pans out.

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Discrete categories not helpful

Postby JFH » Tue Aug 24, 2004 4:42 am

I think Felly's point about "boxes" is well made. The distinctions between RR SP and PP I don't find helpful - that is not to dismiss the real problems experienced by those with more aggressive or severe MS - and by extension the term Benign also I think wrongly used.

I was given a diagnosis of RRMS 7 or 8 weeks ago and I remember thinking then and spending some time trying to convince myself that I was "lucky" not to have SPMS or PPMS. My view has changed quite a lot - thanks I must say to reading contributions on this site - isn't it the case that the condition is so variable that to try to set a discrete set of categories is not a true view of life with MS. And, moreover, by accepting those categories I can only worry about when/if I'll one day land in another. (It may be administratively useful to group people with like symptoms together for, say, the purpose of 2xblind trials.)

My thinking now is that my symptoms are a realisation of one point on a continuum of possible conditions. That is to say each of us with MS are on the same path but our experience of it differs in the amplitude and frequency of the relapses, and the time it will take to move to a given (bad) state. The devil of it, it seems to me, is that none of these "parameters" are knowable or deducible - yet!

(Sorry if that sounds garbled - I haven't had too long to focus my thoughts.)

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benign MS

Postby Cathy » Tue Aug 24, 2004 6:14 am

I work with a woman who was told she had "benign MS'. She was dx about 8-9 years ago, and has had 2 relapses, the last one 5 years ago. Although she had not had relapses-her MRI shows more and more lesions everytime she has it repeated. She is not on any of the meds, which really worries me. I can't help but wonder if one day it will come crashing down on her, but who knows, maybe she will be fine.
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Postby Felly » Tue Aug 24, 2004 6:52 am

I am incredibly surprised she was told she had benign MS after such a short period of time.

From what I have read and my conversations with neurologists the diagnosis is never given before 15 years, even then, most MS specialist neuros these days would not use the term.

I would be worried about her too. I have only two new lesions from years ago on my last MRI 3 months ago* but my neuro still strongly recommended I go on one of the immune modulators.

As there are drugs available, they may not be a solution but until something better comes along, I would have to be daft to take the very-very- small chance that I won't progress as reason enough not to take anything.

Felly

*what can be seen anyway as you need an FMRI to really see the complete picture. This is probably one of the reasons some people do not have any lesions on MRI - the MRI is simply not powerful enough to see the really small ones
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Postby art » Tue Aug 24, 2004 1:58 pm

This study http://www.ncbi.nlm.nih.gov/entrez/quer ... s=15293286 by the Mayo Clinic implies that they define "benign MS" as anyone who has remained below EDSS 2.0 for 10+ years. A description of EDSS is here http://www.albany.net/~tjc/edss.html
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Postby Felly » Tue Aug 24, 2004 3:55 pm

Which just goes to show there isn't a single definition and it depends on the neurologist (s) in question as to what it means.

This link below is to the longest and possibly biggest MS study concerning what is benign MS and comes up with very different results to the Mayo and subscribes to the earlier treatment the better philosophy

Scroll down to Benign MS part
http://patientvideo.com/neurology/multiple+sclerosis

'Conclusions: In the population of BMS defined as either EDSS <=2 or EDSS <=3 at 10 y, a majority of these patients had a worsening of their disability when they are followed at 20 and 30 y and so did not deserve the term of benign MS. Benign MS is a questionable entity.'

I am wary of using the EDSS as the singular measure of disability in MS. According the EDSS my level of disability has only twice gone above 0.0 and that was to only 1.0.

Does this mean I have benign MS? Maybe to some neuros and not to others, maybe to some people who look on from the outside but not to me. I would be pretty cross with myself if I lulled myself in to believing I did because that would lead, for me, to complacency. Once you stop making the effort to fight then you stop living the best that you can whatever the box people put you into.

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Postby Bobble43 » Wed Aug 25, 2004 9:00 am

My MS Specialist does not use the term "benign". Even "Mild" is an iffy term. In my case, I have significant cognitive deficits documented by neuropsych. testing. The EDSS scores, as far as I know, do not take into consideration the inability to process information, short term memory deficits, decreased executive function and etc. Doesn't it deal more with ambulation ability? I am termed "Mild MS", and interferon therapy was suggested immediately due to the cognitive decline. Also brain lesions went from 4 to 10 during the four limbo years. However, I "look fine", can walk without assistance and etc. Most of my symptoms other than cognitive decline are fatigue and sensory.
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Postby GreatWhiteSilence » Tue Aug 31, 2004 11:42 pm

Read this

This is an article about benign MS from the Mayo clinic.
Man, unlike the animals, has never learned that the sole purpose of life is to enjoy it.
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Mayo Research Opinion

Postby treez » Wed Sep 01, 2004 5:21 am

Great White has a link to a great article from Mayo Clinic which is the same article posted in the This Is MS home page news. Kinda answers the original question "IS there Benign MS" Although I don't think I like the implications of the Mayo opinion because I might fall into that catagory. Have had some strange Neuro. "events" over the last 6-8 years but they have always gone away. Just the latest Feb. '04 has been slow to go away but also doesn't follow typical MS type events.

Good article GWS...everyone should read, actually gives those of us with a low disability score some piece of mind as to what the future MAY hold.

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Postby Felly » Wed Sep 01, 2004 6:17 am

Sadly it doesn't give me peace of mind!

There are too many studies and anecdotal experiences that contradict this to make me feel peaceful. And I'm coming up to 16 year with an 0.0 EDSS score.

A girl I went to college with developed MS when she was 25, she was fine for the first 7 years - only the one relapse which she recovered from very quickly.

Then boom - down hill rapidly, she is now double incontinent, in a wheel chair and can hardly speak. But I guess she would have been said to have benign MS according to the MAYO! MS is just too damn unpredictable to take chances with.

I hope it does bring comfort to people but I hope it doesn't bring complacency.

I'm not prepared to play Russian Roulette with my brain, it is too important to me. So I will continue taking copaxone and a vast amount of anti-oxidants and other supplements until something better comes along.

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How True it is!

Postby treez » Wed Sep 01, 2004 6:27 am

As Felly posted, I too am not willing to play with my future. I have too much to do, and too much to look forward to with my 4 yr. old boy Christopher, and my 2 yr. old girl Olivia. The only thing that is giving me piece of mind is knowing that I am doing the best I can with Meds. (Betaseron) and research. And no report or opinion is going to change that! Hopefully I'm buying time until something better comes along (Antegren? yet to be seen).

Interesting reading from Mayo though...........that's what I really meant.

Doing what I can to stay well!

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Postby Jayjonat » Wed Sep 01, 2004 2:15 pm

I completely agree with Felly and Treez, about not taking much comfort in the Mayo Clinic study. Although I went 27 yrs. between major relapses, MS is just too damned unpredictable to bet the odds, and we are fortunate to have some meds out there which apparently do help in reducing those odds. So I'm dealing with Copaxone, vitamins, & a dietary regimen, because the alternative of doing nothing just doesn't make sense to me. I was just doing a diet & vitamin thing, and was holding out on Copaxone, though my neuro. had recommended, until a family friend brought me to my senses-- she asked me why would I not take it, and subject my wife and kids, aged 8 & 13, to potentially deal with my becoming severely disabled. Marriage and parenting are not always the easiest roles, even without dealing with a disability.
I am extremely lucky, in having no observable physical symptoms, other than perhaps some short term memory loss. I want to do everything I can to keep things that way. Looking forward to Antegren in '05 and Aimspro, at some future point, but I will be doing my daily Copaxone thing until the other meds come along.
Jay in L.A.
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