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Recent MRI indicated 60-80 lesions... has anyone heard of this?

My wife has RRMS. We spoke to the nurse who read the MRI report which indicated 60-80 lesions, but when we went to the neuro he told us that there were only 10-16 lesions and declined to give us a copy of the report. I went to the med records dept. and got a copy and indeed it said 60-80. This is scaring us.

  1. , I can understand your terror, it is a high lesion count. But there are things you can do about this. Your wife's disease-modifying therapy might not be doing its job. There are more than 21 different treatments to choose from now and they should be discussed with your doctor.

    I don't know what your relationship with this doctor has been like, whether he has been a concerned physician or controlling and distant. His odd behavior seems to be either a misguided attempt to shield you and your wife from feeling terrified, or a cold-blooded power play. You would know better than I. Either way, he was wrong to lie and withhold medical information that belongs to your wife.

    I'm not a doctor and cannot interpret your test results, but we know that if a new scan shows a much higher lesion count than the previous one, that could be evidence of radiological progression.

    You didn't mention whether your wife's symptoms have worsened. If they have then that could be a sign of clinical progression.

    In either case, your neuro should talk to you about changing your disease-modifying therapy. Whatever drug she is taking, it hasn't been effective in preventing new lesions. That is very concerning.

    You might bring up these concerns at her next appointment. If your wife did have "only" 10-16 new lesions, that would also be a sign that the drug might not be doing its job.

    I hope you will find some answers very soon. Please give us an update and we will be here for you and help if we can.

    Kim

    1. Thank you Kim! My wife's symptoms have worsened over the past several months. She has been on Tysabri for almost 3 1/2 years and the neurologist suggested that she continue for now. I was wondering why he wanted her to continue with the Tysabri when it looks to us that it isn't effective anymore. We'll be seeing her PCP Monday morning with an explaination and a copy of the MRI report. Thanks again for your input!

    2. I forgot to mention that on Monday morning we'll be requesting a referral for a second opinion.

  2. A second opinion sounds like a great idea tarrcm! As Kim mentioned, please give us an update if you can....Janus

    1. Thank you Janus, I don't expect to hear anything until Monday but when I do I'll definitely be back.

      1. The PCP visit revealed no new insight. We were able to request a referral for a second opinion and a different neurologist for M.S. care, just don't know how long that will take.
        I did crop portions of the report eliminating any personal information with hopes of being able to paste it here but that doesn't seem to be an option - just anxious for another person's opinion who knows more than I do. I'll try to PM the photos.

        1. Hi tarrcm,
          you and your wife have been on my mind lately. I hope that you've been able to get answers and that she's been able to get the help you both were seeking.
          Thinking of you both today....Janus

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