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It's not CADASIL!

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    #1

    It's not CADASIL!

    I finally gave in 5 weeks ago, and went for the blood test for cadasil. I was terrified to think that I could have such a rare, fatal disease; but thank God the result was negative! But, now with that uncertainty out of the way, my doctor said yes, that he thinks it is ms.

    I am going for a 3rd (and final) opinion from an MS specialist in a couple of weeks; and then we'll go from there. My neuro, who I really like, is not an MS neuro, and he has been very cautious about a diagnosis. I saw an MS neuro who said without a doubt it's MS, but I didn't like him at all. So, I'm seeing one more, just to get his opinion, and take it from there.

    I am one of those patients whose MRI looks like MS but not really anything else does! So frustrating and confusing, but I'm dealing with it!

    I'm at the point where I think a decision has to be made about starting a DMD (or not) but I just need one more opinion, and hopefully this new neuro can help me take the next step...
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    #2
    that is very good news, now you can go on to treat the disease you do have. who would think ms would be such good news! congrats, sort of you know what i mean
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      #3
      Happy for your good news, no cadasil!

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        #4
        Did you have the test for cadasil because you wated it done or because your neuro suggested it. My sister and I keep wondering if that is why we are not getting dx and our neuros don't want to bring up cadasil.

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          #5
          artgirl

          My neuro suggested the test for a few months before I actually went and got it done. I had so many tests done to dx me for ms, and they mostly came back negative, so he was always on the fence about giving me a full dx for ms.

          He said that my MRI could possibly be the same as a person with cadasil so he suggested it. I avoided it for months, mostly because I was terrified to see the results! Finally, I gave in, because I didn't want to hear him talk about it anymore and just to find out for sure.

          Has your doctor ever said anything to you about it? Have you just read about it on your own? Did you ask your doctor about doing the test? Just an fyi, it was VERY expensive! I almost fell on the floor when I saw the EOB from my insurance company! Maybe that's why your dr. isn't pushing it?

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            #6
            earlier this month a few articles came out that cadsil is ofted misdiagnosed as ms--probably why your doc wanted the test.

            http://www.healthcanal.com/brain-ner...Sclerosis.html

            http://www.news-medical.net/news/201...sclerosis.aspx

            http://www.sciencedaily.com/releases...0309091331.htm

            http://www.medicalnewstoday.com/articles/218685.php
            xxxxxxxxxxx

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