Please let me know what you think about the horrible experience I had when I last went for my four-weekly Tysabri infusion.
I turned up early and answered the usual questions about the state of my health. Since my last infusion, I had experienced one new symptom, which was not being able to straighten the fingers on my left hand if I had my palm facing upwards (able to do it fine if my palm was facing downwards). I also had had the recurrence of one old symptom, that is not being able to lift my feet off the floor when sitting. By the time I was answering the questionnaire, I could do both these things again - I demonstrated them.
Rather than filling out a prescription for Tysabri after giving me the questionnaire, the junior doctor (the minion) went off to consult the neurologist. When he came back, he said I was not going to be given Tysabri that day. I was to go home and I would have to come in again for an MRI and hopefully be given Tysabri two weeks later. My last MRI was in June this year.
I am very scared of having more than four weeks between infusions. I feel as if Tysabri is barely keeping my MS under control and also that losing much more function will impact hugely on my life. I can still walk and get up stairs but I can only just do these things and life will really change for me if I can’t do them. So when I was told I couldn’t have the Tysabri, I started to sob and beg the minion to let me have the drug. I promised that I would come in for the MRI whenever they wanted me to (I have objected to what I saw as unnecessary MRIs in the past). The minion told me the neurologist made the decisions but he would get the neurologist to come and talk to me.
The neurologist was in a (long) meeting and then had a consultation with another patient but I waited for about two hours and then I got to see him. I cried again and I think I begged - I definitely meant to but it’s a bit blurred in my mind. I couldn’t understand why he wanted me to have an MRI before I could have the Tysabri but I didn’t want to put him on the spot about it because I was terrified that if I antagonised him, he would never let me have the drug again. He insisted I must have an MRI and he arranged for me to have the MRI right then. I know this sounds unlikely but it is absolutely true. A nurse visiting the ward accompanied me to the MRI scanner, in a different part of the hospital. I took off my watch and metallic bits of clothing and had the scan and went back to the MS outpatients ward.
By this time, I was calm because I knew that having got the MRI out of the way, I could come back the next day for the Tysabri. In fact, I didn’t even have to do that. I hung around on the outpatients ward, wondering if I should just give up and go home and then one of the MS nurses came in and said the neurologist had looked at the MRI and said it was fine for me to have the Tysabri right then - it was mid afternoon by this time. The nurses on the ward said they had never seen anyone have an MRI and Tysabri on the same day, so I should clock it up as a ‘first person to’. I always feel a bit rough after Tysabri and I felt a bit worse than normal after all the crying (swollen eyes and a bit of a headache).
I had to cancel coffee with a friend because my afternoon was all used up. When I told her what had happened, she was completely incensed. She thought the neurologist had acted in a totally unjustifiable way. I thought I had caused the trouble by telling the minion about minor symptoms that had come and gone away again, giving the neurologist an excuse to force me to have an MRI that I didn’t want. What do you think?