This Is MS Multiple Sclerosis Community: Knowledge & Support

I'd like to ask a few questions : how many total MRI lesions do you have ? And since when ? Did some of them disappear ? Did your condition worsened rapidly if you have many lesions ?

I know we cannot make so simple comparisons, but I'd like to.

Hi Jean,

I was diagnosed with almost 100% positive MS the day after my first MRI 4 years ago. I have too many MS-type lesions to count, and they've been noted throughout my brain (including a couple of giant ones), as well as in the brainstem, C-spine and optic nerve.

I consider myself to have relatively mildish MS (for someone who has apparently had it for over 30 years), and they see no sign that I've ever even had optic neuritis.

Although there are occasions where lesion location is specific to a symptom - especially in the spine - the number, size, or location of lesions does not necessarily correlate with symptoms, exacerbations, degree of disability or anything else.

There's a really interesting site "The Whole Brain Atlas" that shows time lapse MRIs of MS lesions. If you click on Multiple Sclerosis you can then click on different "slices" of MRI pics and then on each month to watch how lesions appear and disappear over the course of a year or so. Or click on "Cine" for the movie version. It's fascinating how quickly they can come and go.

http://www.med.harvard.edu/AANLIB/home.html

Good luck to you.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Hello Jean,
The number of lesions you have used to be taken as a measure of how severe your disease was, but over the years it has become clear that this is not the case: you can have lots of lesions with very little disability, and only a few lesions but quite severe disability. It seems to be that where the lesions are located is more important than how many you have, and also the pattern of distribution, as well as the type of lesion, is significant.
Medical opinion is slow to change, however, and you will still find lots of doctors and neurologists who count the number of lesions to measure disease progress, as well as researchers who use it to determine how effective a therapy is.
That's not to say that lesion load is unimportant, just that it is one of many factors to be taken into consideration. You are right to point out that sometimes lesions can disappear.
I've never known how many I have, because when I was diagnosed the attitude of my doctors was, " there is no point in monitoring, because there's nothing we can do anyway". Luckily, at least things have changed in that regard,

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Dom

Thanks for the link, it's great. (and it shows me that my own situation is not as bad as I thought, when I see the size and number of lesions)

I know ther's no correlation between exacerbations, handicap and lesions, but I've read there was probably a correlation between the number of lesions on initial MRI and the prognosis, and the speed of the disease progression. This what worries me much. Thus my question.

Up ! Is there any more people who could tell me about their number of lesions please ?

Thank you all

Jean, the number of lesions really don't matter much. Many of the lesions we have that are causing symptoms are in the gray and white matter that don't show up on an MRI.

Reread twistedhelix's post to you because what he has posted is more accurate as far as lesions and being able to determine future disability.

You can worry all that you want, but in the end the worry does nothing for your disease progressing or stabilizing.

Enjoy life.

gwa

I was diagnosed with 12 - 15 brain legions, and one on my spine in 12/05. Since then I've have about 4 MRIs, and I have no new legions on my brain, none have enlarged, and some disappeared. The one on my spine shriveled, but did not disappear.

I'd like to attribute this improvement to my exercise and vitamin regimine (w/ the occasional steriod pulse), but I guess I'm just lucky.

I've read TwistedHelix's post, and I totally agree with him. I agree that the number and/or size of lesions is not necessarily correlated with disability. However, several articles I've read tend to show that the only correlation which can be made is between the number of lesions seen on the first MRI scan, and the disability reached 15 years later. That's why I asked the question, because I'm young, and I have important choices to made at the moment (jobs, place to live, etc..). This is my girlfriend who was diagnosed with MS, and I counted too many lesions on her MRI scan to be fully reassured for our future.

I can give you links to the articles I mentioned, but they're in French. Please ask if you'd like to have them

Jean,

Although I have been diagnosed with MS for over 35 years, I did not have an MRI until about a dozen or so years ago. At that time, I had 5 very small (neuro said comma sized) lesions in my brain.

Prior to having the MRI, I had many attacks and had a lot of trouble with leg weakness and balance. The number and size of my lesions were very surprising to my doctor, who had anticipated more lesions as well as larger lesions.

I still maintain that you cannot judge how someone will be in 10 or 15 years based on the number of lesions showing up. As far as I know, there is still no way for doctors to give an educated opinion of how we will be in a few years. Many try, but they are guessing and may be off target.

Too many of the lesions are hidden and it has only been recently that researchers have become aware of the lesions forming in hidden areas of the brain.

If you love this woman, find other ways to count your love rather than counting her lesions. If you are worried now about how she will be at a later date, maybe you should consider if you would be able to still love her when she is not well.

The main thing my mother and husband liked about my MRI was that it looked like a frog was inside the top part of my brain. The lesions were not a big deal.

gwa

Jean, I have had MS since I was 24. Then relapses were few and far between and resolved completely, or so it seemed. In 2001 my disease took a sudden and definite turn for the worse and the full resolving stopped. Two years later I had my first MRI and saw old lesions in the perivascular space that had been there so long they had fossilized. They had been there all that time and I didn't know. I also had lots of more recent lesions which were bright and shiny. I started antibiotic treatment and started improving very quickly. Six months later I had another MRI and there were no new lesions and all the bright ones were less bright and many were shrunken. Six months on again, no new lesions and more dimming and shrinking. A few had vanished. One year on again, no change worth mentioning, no new lesions, slowly improving in function with my treatment. Nearly three years on again, the same.

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.

Hi Jean,
Although I don't have the personal experience, I've got to agree with what most everyone has told you. DON'T put too much weight and don't base your future on any one or two studies which have come out recently. Over the years SO many flashes in the pan like that have come and gone....amounted to nothing.

If one thing is certain in the world of MS, it's that researchers have no idea when the MS mechanism begins and even though it's treated as such, even by most researchers, the beginning of MS isn't the point of diagnosis or even shortly before that.

As Sarah mentioned, progression can be slow for years and years and suddenly take a horrific turn for the worse and the other way around.

Not that it makes your decision any easier for you but until researchers can define what MS "is" and can define when it starts, they don't have a hope of defining it's future course.

The bottom line is that, although they know when the subjects were diagnosed, the researchers really have no idea how many years the MS mechanism has been simmering, undetected.

Literally those studies are worthless brain candy.

I'm not sure what that means? You're questioning whether you and she have a future at all, or you're questioning whether it's going to be a difficult journey for the both of you?

Bob

To Jean, I agree with everything that GWA wrote:

This is a decision that only YOU can make. You know yourself and what you can handle; your girlfriend will deal with this because she must--you have a choice.

I will still love her when she is not well.That's not the point. At the moment, we're living together, because, we're luckily studying in the same city. But next year, I have the choice to go studying 600 km away for 3 years (PhD), and I will be able to see her only in the week end. The second choice is to get a job in the same city as her, knowing that this job is less interesting than the first option. The question is : if she gets worse during the next 3 years, won't I regret not being with her ? Will I regret having lost 3 years with her just for an interesting PhD, whereas life is so short ?

Sorry Jean, there's no right answer in situations like this. Sucks. If you decide to stay with her, don't stay out of pity; if you choose the PHD, don't leave for fear of staying... And avoid advice at all cost.

You're right, syckbastid, there's no answer for that situation. Usually, I hate making choices, and this one is maybe the worst I have to face in my life. It seems to me there's no good choice, because if I stay, I'll somehow regret the PhD, and if I leave, I'll regret the years I could have spent with her. At this point, I almost hope that I won't have one of the 2 possibilities. If I have no choice, I'm less likely to regret it.

Thank you for your advice, syckbastid. Paradoxically, it's the most comforting one I had for many weeks.