Worst Case Scenario

28 Sep

I knew everything that he was going to say before he said it. Well minus the medication he thinks that I should be on now. Yet somehow I am shocked. I feel like I was just diagnosed for the first time, all over again. Except this time I know exactly what that means. My mantra for the day is “pull it together, you are going to be ok”. My little bubble of them deciding that I was misdiagnosed and I’m really just fine was definitely popped last night. But let me write about the good things first.

The MS Care Center was very nice. It made me feel like I was actually seeing someone who knew what they were talking about. Actually it was more like a whole team of people who knew what they were talking about. It was wonderful. First there was a physical therapist, I think, it was late, I was tired and slightly delusional. He had me do a test that I have never done before. I had to put little pegs into a little board and then take them back out again. He timed me for this and apparently I did ok. The hardest part was that the pegs were in a bowl which made them hard to pick up and atleast a pot of coffee into the day my hands were shaking, but I did it in 22 seconds. He said anything around 20 was normal. Then there was the walking down the hall in a straight line. I’ve done that before. I managed to not bump into any walls. Then into the exam room where a nurse made sure that I didn’t have any numb areas and checked my blood pressure. All still good. Then the doc came in. He did the usual tests. Follow my finger with your eyes, and he hit my elbows and knees with that stupid hammer, and the strength tests. Still good.  Apparently my biggest problem was that I opened my mouth. Oh and my MRI wasn’t good either.

He said that everything that I have been experiencing, plus my last MRI prove to him that the copaxone isn’t working for me. So now I need to go for another MRI, good bye $300. He is trying, and I think he’s winning, to talk me into switching to Tysabri. My biggest problem with Tysabri is that the side effect is death. No joke. Death! Well to be more specific a brain infection called PML. So I am taking a blood test on Friday to see if I already have PML, since it already exists silently in some people. However, even if I don’t have it there is the possibility that I could contract it.  UHG! The reason I am considering it is that it’s success rate for “quieting” MS is really good. Of course it’s only been out for 2 years but all MS treatments pretty much just came out, except copaxone. Like a lost love, that’s how I feel about it now. Copaxone has been around for roughly 16 years now and if it works is wonderful. Damn it! Why did I have to be one of the people it didn’t work for?

I really, really am trying to see the silver lining here. Maybe it’s that I won’t have to give myself shots anymore. Tysabri is an infusion that you get once a month and is given by a professional. No at home, the husband has to do it, infusions like the steroids were. So I guess that’s good.

Now I just have to have my MRI, pray that there aren’t new lesions, and take my blood test. End result, new drug by Christmas.


Posted by on September 28, 2011 in Life with MS


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2 responses to “Worst Case Scenario

  1. Greg

    September 29, 2011 at 1:45 pm


    I saw this post in my Google Alerts. I’ve been on Tysabri for five years. It’s been great for me, but it’s your decision. I did want to correct the statement above in the hopes that it helps a bit. That blood test you are taking is to see if you have the JC virus, which is the virus that causes the PML disease. About 50% of all people have the JC virus, so it does not mean that you will get PML. It’s just that if you don’t have it, you have virtually no chance of getting PML.

    • Janet DiFolco

      September 29, 2011 at 3:17 pm

      That makes it sound slightly less scary. Thank you for correcting me. I’m not sure what I am going to do if the blood test comes back positive. However, I am definitely going to go on Tysabri if it comes back negative.


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