How Many Spots?

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How Many Spots?

Postby Mary » Fri Jan 27, 2006 12:41 pm

I know there is no constant or known when it comes to ms, but how many lesions are "a lot"? I had a MRI a year ago and in my follow up appointment the neuro said I had 2 lesions...yet his report called the amount "extensive". My current neuro says perhaps what was meant is that I had 2 active lesions at the time of the MRI. I just had a MRI a few weeks ago and just had my follow up and the neuro counted 16 lesions, but calls that a "moderate" amount. The number 16 freaked me out, it sounds like so many, especially since I thought I had 2 previous. I know, and the neuro tells me again, that the number of lesions has nothing to do with the symptons/effects (although I still have trouble grasping that one)...but how many is a lot? Is 16 a rather large number to have? I'm not having any trouble at the moment (thankfully), but it distresses me nonetheless to think there are that many in my brain at the moment...
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Postby Mary » Sun Jan 29, 2006 3:24 pm

Does no one have any input to offer on what is a "large" amount of lesions to have? Maybe it's not as simple as that, but any opinion, personal stories, etc. would be appreciated....

Thanks

Mary
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Lesion Load

Postby Shayk » Sun Jan 29, 2006 6:53 pm

Hi Mary

I can really understand your concern. It took me about 2 months after my diagnosis to figure out that I had too many lesions to even count because the neuros were evasive when I asked them. They did tell me I had more than 9 greater than 2 cm. and I have no idea how many smaller ones I have.

I know it's really hard to grasp that there is little correlation between the number of lesions and your symptoms and/or disability, but from what I've read in the 2 years since I've been diagnosed that is definitely the case. Some people have very few lesions but significant disability while others have lots of lesions and relatively little, if any, disability. My neuro only does MRIs if they're needed to make treatment decisions and so far the only ones I had were to confirm the diagnosis.

I've been diagnosed a little over 2 years and am still working full time, managing a house and yard and having some fun to boot. :) I really don't know though what is considered "a lot" of lesions.

It's good you're doing well. In 2 years I think I've learned not to worry about how many lesions I have. :) Hopefully some others will respond as well. It's entirely possible someone knows what's "a lot" of lesions. My take on it is just that, my take on it.

Take care

Sharon
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Postby mrhodes40 » Sun Jan 29, 2006 8:06 pm

I have to agree with SHaron. A lot is not meaningful I have only 4 -the same 4 I've always had (I've had lots of MRIs my doc does them every 6-12 months) . My friend's MRI looks like someone took a white out bottle and flipped their finger through the bristles she has so many little spots on hers. Mine is so minor looking I appear as my neuro said "less affected than the average first visit MSer'. Well! I've had MS for 15 years,, but I am definetely SPMS and barely still able to drive, use a cane, my right hand is now affected, if I'm in an airport or something I need a chair etc. Yet I have this really "good" MRI. I've been on cop since it came out. COuld that be why my MRI looks so good? I do not know but somehow I have invisble progression (I do have one small balck hole this last MRI in the middle of an old lesion).

If you can functin well, plan on still functioning well for along time. I sure could. For at leawt 6 years after diagnosis I could run. I did my best to eat well and tried many safe alternative things (avoiding allergenic foods etc) I think these things keep one best able to repair as possible becasue it is known we do repair. You'll be surprised perhaps that you do do so well. I sure did better than I expected. If I could go back now to my newly diagnosed self I'd say "You will be OK. Be peaceful and do not worry about the little twinges and things. They come and go. Just relax and take care You will do whatever you need to if you come to that"
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Postby remnants » Sun Jan 29, 2006 10:40 pm

Hi Mary,

My initial/diagnostic MRI showed numerous lesions (more than a dozen) in the brain and several in the spine. While the neurologist did not make any comment as to number of lesions, he did comment on the location, indicating that the lesions in my brain didn't concern him as much as those in my spine. In addition, I did read somewhere that MS patients with spinal lesions were more likely to suffer significant disability.

Take Care!!!

Cindy
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Postby Mary » Mon Jan 30, 2006 6:20 am

Thanks very much everyone for the responses, I do appreciate it. It helps me to hear other's stories, helps ease my mind. I will take your advice and try not to focus on the number of lesions and instead try to focus on my general health and be grateful that I am doing ok. In fact, I'd like not to focus on ms at all, but it consumes me, I think about it constantly, but hopefully time will help with that. I hate to think that I waste this "good" period waiting for the other shoe to drop, but again, hopefully time will help with that, the more time, the better adjusted I get I hope.

But thanks again, it really helps and is comforting to hear from others who can understand what the ms experience is.

Mary
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Spots

Postby bromley » Wed Feb 01, 2006 11:12 am

Mary,

This is an extract from the UK MRI Unit Summary of Research 2005:

'MRI lesion volume has some effect on the long term course but is a relatively weak predictor. We are now investigating other measures that show a more extensive abnormality than just the visible lesions. There are intrinsic abnormalities in the normal appearing white matter and grey matter that show up with measures including magnetisation transfer ratio (MTR) - specific types of MRI scans allowing more precise detection of damage, and MR spectroscopy. There is also loss of tissue in both the white and grey matter'.

So the actual number of lesions (white matter) is not a good predictor.


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