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Posted 9/4/2006 9:53 AM (GMT 0)
How many lesions do you get in a given year?

I am curious because I JUST got the report for an MRI I got done a year ago in a research study out at UCSF. This was the second year I was in the study and the report stops counting lesions after 10 (the local MRI guy stops counting at 30 lesions), but one lesion had gotten larger and there was an active lesion.

This has me in shock at the moment. I tell my family and they get speechless, I just think "well I knew I was getting worse this just proves it!" So I have had no emotion about it till last night. I was talking to my coworker and just started crying! Now I just want to know how concerned I should be because of MRI results. In two weeks I will be back to get another MRI for the study, and I feel that the results won't be good =( 

Could I be considered to have a more progressive form of MS because of all the active and inactive lesions I have?

Thanks in advance for your response!

Posted 9/4/2006 11:46 AM (GMT 0)

Like most things with MS, there is no "correct" answer to your question.  Some folks have lots of lesions, some only a few; sometimes early in the course of the disease the doctor will find lots of new lesions from MRI to MRI; sometimes not. Just like sometimes early in the course of the disease a person will experience lots of exacerbations, and then the number will seem to level off.

Besides that, it's not the number of lesions that is of concern, but the location of them.  Lots of lesions in areas of the brain where they're not having much external effect aren't serious; one lesion somewhere in the brainstem, for example, which affects breathing, can be way serious.

I don't know how many lesions I have.  The only MRI which "counted" them was done years and years ago.  My last MRI was done maybe ten years ago, now, and just confirmed that I had MS, with no mention of lesion numbers.

What study are you in?  Are you able to be on one of the disease-modifying drugs while also in the study?

Posted 9/6/2006 9:06 PM (GMT 0)
I am in a Gene Study out of UCSF. I saw an article on it at nmss.org. I was directed there when I asked questions about the study to one of the administrators. Yes, I still take any and all meds that any doc wants to give me. I basically get a "free" MRI with an advanced MRI machine yearly. I also get MRI's in my hometown as well.

Thank you for your response! I know enough about MS to know that any question I have will not have a "true" answer. Sometimes I get scared and just need to ask and know what others experience. =(

Posted 9/7/2006 12:29 PM (GMT 0)
Hi Sandy,

I think it's great you are able to participate in the study and get free MRI's! They are quite expensive! I'm sorry you feel that you are getting worse sad The MRI's are a good tool for dx and to see if the meds are working but you may still get new lesions even on therapy. The number of lesions and getting new ones doesn't really determine if you now have Progressive MS. If you are concerned you may now be Progressive you could ask your doctor, as watching how symptoms are progressing over time determines if you might have moved on to SPMS. Typically with SPMS, the relapses/remissions slow down or stop altogether and the symptoms don't improve as much as they do in RRMS but instead slowly worsen over time.

Personally, I would be more concerned with symptoms than the MRI findings, since you have already been diagnosed, and try to manage those symptoms as best you can. If you are getting new symptoms and the MRI's continue to find new lesions you might consult with your doctor to see if additional treatments to Copaxone or switching to another medication is a necesssary step. Best of luck to you Sandy, please keep us updated :-)

Kimber
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