Lucky Number Seven

Last week I had my six month Tysabri check up and my 7th Tysabri infusion. The infusion went really well. I was pretreated with Benedryl and the infusion was given over two hours. I didn’t have any side effects other than being really tired for the whole day. Out of my seven infusions, four, six and seven have been pretty much side effect free. The only thing that make these infusions different from the others is that I wasn’t taking any vitamins or supplements for at least three weeks prior to the infusions. Dr. Foley recommended adding my multi-vitamin back and see how number 8 goes and then add one more thing in each month. It sounds logical to me but I am anxious to get my supplements back.

As for my six month check up, that wasn’t as picture perfect as the infusion. I had new MRI’s reviewed and while I don’t have any new lesions or activity in the brain, I do have my first spinal cord lesion. The radiologist reports: “I am concerned that the patient has developed a small area of increased T2 signal in the cervical spinal cord; this is located at the C7 level off midline to the right.”

So? What does Dr. Foley say? He is concerned as well but is not sure when the lesion formed. My last C Spine MRI was done in 2006 just prior to my diagnosis. At that point I had no lesions on my spinal cord. The new lesion could have come while I was on Rebif or Avonex. The big concern is that the lesion formed since I have been taking Tysabri. There is really no telling unless a. more lesions form or b. I have another MRI scan with one of the stronger MRI machines that are available in this area. I don’t know enough about the technology yet but from what I understand, it is a more detailed scan and may be able to tell when the lesion formed. My neuro exam went fine and Dr. Foley recommended another scan in June.

I have decided not to wait until June.

My six month exam was right after my Benedryl induced infusion so I was not at the top of my game and am concerned that it was a little quick and I didn’t ask the right questions. I am going to schedule another appointment with a P.A. and be sure that I get a referral for a new MRI sooner than June. I want to know what is going on!!

My first reaction was to test again for Tysabri Antibodies until I learned that the Antibody test is either positive or negative and no value or degree is assigned. With low levels of antibodies, Tysabri may still be effective but with a positive antibody test, insurance companies will likely deny future Tysabri claims.

So?? How am I? Physically, I feel fine and after the initial shock and disappointment, I am doing ok emotionally as well. When I first read the MRI report, it was like being diagnosed all over again. Then I remembered how I felt a few months after being diagnosed and did a fast forward. I know I have to learn more before I can be really concerned. Hopefully this is just a minor set back.

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2 responses to “Lucky Number Seven

  1. Courtney – You are an AMAZING inspiration. I can’t believe how you take control and educate yourself. I don’t know how you do it. I know you will find a way to make yourself stronger in spite of this. And I am here if I can do anything for you. In the meantime – all my love is headed your way – SILLY

  2. Sorry to hear about the lesion on your spine, Because of your strength and attitude I know you will do what is best for you.

    Good Luck!

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