Long-term follow-up of benign MS

Long-term follow-up of benign multiple sclerosis in Hordaland County, Western Norway

Abstract

Objective

To study the frequency of benign multiple sclerosis (MS) after 20 years disease duration and identify early clinical and demographic prognostic factors of a benign course.

Methods

A population-based cohort including all 230 MS patients with clinical disease onset during 1976–1986 in Hordaland County, Western Norway was followed up with clinical examination in 1995 and 2003. Benign MS was defined as an Expanded Disability Status Scale (EDSS) score 3.0, at least 10 years after disease onset.

Results

A relapsing–remitting disease course at onset, female gender, and younger age at onset were significantly associated with a benign course, but could only explain 23.0% of the variation in the benign course. A low annual relapse rate was also associated with a benign course. When including this variable in the model, 42.3% of the variation could be explained. The number of benign MS cases decreased significantly from 37.6% in 1995 to 24.2% in 2003.

Conclusion

Benign MS is frequently a temporary condition. Only a small part of the variation in the long-term benign course could be explained by clinical data present in the early phase of the disease. With several new emerging therapies in MS, the need for more reliable prognostic factors is increasing, to improve and individualize patient treatment.


SB Glad1*, HI Nyland1, JH Aarseth2, T Riise3, and KM Myhr1
1 Department of Neurology, The Norwegian Multiple Sclerosis Competence Centre, Haukeland University Hospital, Bergen, Norway; Department of Clinical Medicine, University of Bergen, Bergen, Norway
2 Department of Neurology, The Norwegian Multiple Sclerosis Competence Centre, Haukeland University Hospital, Bergen, Norway
3 Department of Neurology, The Norwegian Multiple Sclerosis Competence Centre, Haukeland University Hospital, Bergen, Norway; Department of Public Health and Primary Health Care, University of Bergen, Norway

[Ufrustrated2]

interesting conclusion. that is supportive of what members of this forum have stated many times, there really isn't a state of "benign MS" as some neuro's tell their patients.

is that a correct interpretation of the conclusion?

enjoyed the read

[Karen99]

Very interesting.  I've had one major "attack" in 2001.  Before that, one episode of suspected ON and a few other very minor neurological problems that were later recognized as "time and space."   (I suspected the source was CNS, even suggested MS but the doctors I were seeing did not think so.)

In 2001 I was clinically diagnosed MS.  The MRI that followed within a few days later confirmed the diagnosis. The machine used was a 1.5 Telsa.  During the years I've had several MRI, just 2 or 3 new lesions seen on a 3.0 strength since 2001.

More than one neurologist has told me that I have mild or benign MS.  Most suggest that I be on a DMD.  I took Copaxone for two years.

What I cannot figure out is, is it worth being on a DMD when I have had no relapses with so few lesions?  I know most of you will holler "Yes."  I know the risk of now being on one, but how is a DMD going to improve my situation when my lesion load is small and relapses undetectable, if there are any going on?  

I'm somewhat comfortable with my decision not to use a DMD at this time.  I WILL when one is invented that prevents converting to progressive type.  

I have Fibromyalgia too. I have been told that patients with Fibromyalgia and MS frequently have a milder MS disease course.  The one symptom that I cannot get rid of is fatigue.  The DMD's are not going to help with that.  

The thought of having another whopper of an attack like the one in 2001 scares the heck out of me but I am not convinced that a DMD will prevent that from happening.  At the rate I'm going I don't think I could ask for more.  The expense of a DMD would cause severe financial hardship.  

What do you all think?  (I am ducking as I ask this question)

[Mand125]

Hi Karen
No need to duck, your decision has to be what you are comfortable with.

I was diagnosed with "mild" ms in 1994 after mostly sensory symptoms. For many years that was all I had, one bad attack of vertigo that lasted a couple of weeks.

About two and a half years ago I started to get one relapse after another and last August I started on betaseron.

Since then I have not had any more relapses but the problems that I have been left with are still there, mainly difficulty in walking.

I truly wish I had been on a DMD a couple of years earlier but even if I had known what I know now I do not think I would have been given one.

Anyway that's my story.

Take Care
Mand

[Lulu54]

Its good to read that researchers can agree with us!  When Q sees this one she will definitely be doing the Snoopy dance ....

L

[Rena705]

Hey db...thanks for that juicy little tidbit honey...it will be added to my arsenal of info for my appointment in Sept. with Dr. G.  As I am sitting here having an icepick jammed into my temple I will keep in mind that "Benign MS is frequently a temporary condition" and perhaps throw that on his plate to think about for a while eh?  hehe

Lulu..I am doing the not only the Snoopy dance but the Canadian Lottery Winner's Happy dance as well...will let you know when I am done but it will probably be a few days from now :)  hehe

Lots of Hugs,
Rena

[shoshin]

Thanks for posting this. It's interesting to see that this "benign" MS is a bit of a crock (at least at this point in time) since they can't really predict who is going to stay benign and many people don't.

I have seen (although I'm sure I won't be able to find it at the moment) some newer research that suggests that a better definition of benign MS would be a lower EDSS score than 3 (although I forget the number suggested). FWIW, my EDSS scores seem to come out to 3 or 3.5 (mostly 3 and I have not been able to discern an obvious reason for the differences) and I certainly don't consider my MS "benign."

Benign seems to imply that it has no significant impact on one's life, which is not the case. I can hardly walk a half mile and it's not a pleasant experience, I can't drive any significant distance as I can't trust my feet to react as well as I'd like them, too, I can't really doing anything in the garden anymore as the bending/squatting kills me and I very quickly get so I can't stand up, I am reluctant to change jobs as I have a pretty secure, supportive situation right now and on and on. I don't have the energy or the stamina to do many things that I would like to do.

I think I also read somewhere that a lot of people with so-called "benign" MS were on disability for things like cognitive problems that aren't so well picked up by the EDSS (which focuses a lot on walking ability) so presumably MS was not a benign presence in their lives, either.

The only reason I manage as well as I do is that I have a desk job, no kids, and a very helpful husband. I could be in a lot more trouble.

I get tired of words like "mild" (a neuro recently told me that 3 is "mild") and "benign." I think if neuros had to live like this, they'd come up with some better words. It's true that my problems are mild compared to those of many people with MS, but it all depends on your reference range. If I compare myself to normal, healthy people, I am definitely limited (It seems sort of like some research that suggests that many people are less happy now because their reference range has become the unrealistic people they see on TV rather than their neighbors).

sho