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Number of enhanced lesions=?!!!!!!!Please help

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    Number of enhanced lesions=?!!!!!!!Please help

    For anyone familiar with your enhanced lesion count in the past or present, please share your stories of how you are doing now. Is is fair to say the more enhanced lesions you have, the worse off you will be?

    I have been lurking on this wonderful site for almost 2 years now. I was diagnosed with what I though was just CIS on 11/30/09. 8 lesions were detected, 3 of which were enhanced.

    Fast forward 2 years and I am now questioning the enhanced lesion number. I no longer have any enhanced lesions or any new lesions at all but I was just reading that MS can be diagnosed simply by the presence of one enhanced lesion. I HAD THREE!

    Extra info-I have been asymptomatic for 2 years besides severe fatigue. I have been on Avonex for almost 2 years as well. I am a 34 year old stay at home mother of 5 kids 11 and under.

    Please share your stories! I am eagerly waiting

    Jen

    #2
    Originally posted by all4my5 View Post
    I was just reading that MS can be diagnosed simply by the presence of one enhanced lesion.
    What was your source? I have never read or heard that. Pretty sure that any demyelinating disease is going to give you enhanced lesions. Having enhanced lesions is just one piece of the MS puzzle. From what I've read and been told, there is nothing that gives a definite MS diagnosis.

    I had two enhanced lesions when I was tenatively diagnosed by the inpatient neurologist. One was pretty large in size. 9mm to be exact. I'm still not back to where I was before hand.

    I was having symptoms which is when they found the lesions.

    My guess would be that the more symptoms you have, the worse off you are, not so much the number of lesions or ehanced ones you have. They say, "treat the patient, not the MRI" and if you're asymptomatic other than fatigue, it sounds like you are a lot better off than somebody who has 1 lesion and has debilitating symptoms.

    But at the same time, I think this MS thing is SO different for EVERYBODY that there just isn't any way to know, for anybody, who is worse off than another. Which sucks when you want answers!!
    Diagnosed Aug. 2011 - Currently on Tysabri

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      #3
      Originally posted by shutterbug518 View Post
      What was your source? I have never read or heard that. Pretty sure that any demyelinating disease is going to give you enhanced lesions. Having enhanced lesions is just one piece of the MS puzzle. From what I've read and been told, there is nothing that gives a definite MS diagnosis.
      http://onlinelibrary.wiley.com/doi/1...ana.22366/full

      Scroll down to Table 4. The 2010 McDonald Criteria for Diagnosis of MS. These revisions are relatively recent and I'm sure many doctors still go by the 2005 revisions. These revisions are supposed to allow for earlier dx and thus earlier treatment.

      all4my5, I couldn't tell you how many enhanced lesions I had on my last MRI, it's been a while. But to be frank, after I was dx'd, the only time I have an MRI is when I'm considering a drug switch, so I don't really pay attention to the number. Just knowing I have active lesions or not is the key.

      As far as this goes :

      Is is fair to say the more enhanced lesions you have, the worse off you will be?
      I would say the total number of lesions in conjunction with their location is more important in saying if you'll be worse than the number of enhancing specifically. Enhancing lesions are only active lesions. They'll only enhance for a few weeks at best.

      Really, you can't predict any outcome from MRI. So many people have lesions and are asymptomatic and others with just one or two are devastated. You can only make vague generalizations in regard to a lesion's potential effects.

      The significance of enhancing lesions , as you know,while being dx'd is that they can show DIT. After dx, they can help in deciding if your DMD is right for you. Some folks will get an MRI when they have a relapse, but they only confirm what you already know: that you have some activity. For those on Ty, they are important because of the specter of PML.

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        #4
        I second what MRS Bones said & want to add a part of my own.Lesions enhance on average for 30 days some a little longer and some less...the mri is just a snapshot in time. if it happened to have caught the lesions enhanced doesn't really matter. if they are new(i mean as not there before)_ whether enhanced or not, that is all that matters. if they are not enhanced it means they were enhanced before, the mri just wasn't done when they were enhancing.

        if they enhance it means they are inflamed and steroids can be used to reduce the inflamation it may lessen the symptoms of the relapse(inflamation) but doesn't change the final outcome of the new lesion...so steroid use is controversial...steroids have negative effects of weakening bones & teeth and messing with blood sugar, but sterods do have a positive effect of reducing the symptoms inflammation cause--- while the inflamation is there(on average 30 days without steroids) without any vidence of steroids changing the final outcome...so steroids use is controversial.

        I made my argument that it doesn't matter if they enhance or not, it just matter if they were they before or not.

        more is not as good as less. On average a person with ms will develop 10-12 "silent" lesions a year. neither the doc or the person will know the have developed, it will only be seen an an mri that they did develop. the mri is used to determine if the med is being effective at preventing these lesions-'silent or not' (asymptomatic or symptomatic)

        I got that 10-20 lesion average for people with MS in this article although i have read it in many more, this is the one i have bookmarked.

        Page 4, bottom of 2nd column

        http://www.mscenter.org/images/stori...er09lowres.pdf
        xxxxxxxxxxx

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          #5
          Originally posted by 0485c10 View Post
          more is not as good as less. On average a person with ms will develop 10-12 "silent" lesions a year.

          correction 10-20 "silent lesions" a year. i typed it wrong in one pace and right in another place, but i did provide the link so you could verify which was correct.

          more is not as good as less===you will notice everything in MS is comparative like that, nothing is absolute in ms...

          its never just "bad"...it "more" or "less" aggressive ect.

          interesting in that link i provided it talks about how the brain is able to reroute around damage areas and that is a part that makes MS a relative thing (more or less).
          xxxxxxxxxxx

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            #6
            It can, and does (for people with RR disease), initially re-route to undamaged areas, but for more than 85% of people MS will continue to progress, and your brain will eventually run out of "routes" to take. That's when it starts to attack the axons, and that's when permanent disability starts to come into the picture.

            The present DMDs (or DMTs) are only partially effective in stopping that from happening. They're only known to SLOW DOWN the damage, not stop it.

            (N.B. DMD=Disease Modifying Drug; DMT=disease modifying therapy. I've seen them referred to using both abbreviations)
            “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
            Diagnosed 1979

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              #7
              THANK YOU ALL FOR TAKING THE TIME TO RESPOND!

              JEN

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