Received first Tysabri infusion yesterday. Went smoothly, no side effects as of yet. Next appt. 5/08/09 @12:30.

Starting on 29MAR09 started getting a cold. Missed all but 3hrs of work this week. Wednesday April 1 couldn't get out of bed at night. Struggled to get out of bed in the morning. Thursday I went to work for 3hrs, that was in for the whole week. Doing better now, getting over the cold, but still fatigued.

First Tysabri infusion April 10, 2009 at 12:30pm in ABQ. Was told it will last 4hrs this time, then two hours every 4 weeks after that. Was told to bring the film of my last MRI and it's associated report. The game is on!
More info. on the drug see:
http://www.tysabri.com/

Got the ball rolling for my next step in my MS journey. Went to the Tysabri web site and found sites licenced to do the infusions within 100 miles. A Santa Fe site was listed, so I called Tysabri people and said I have not been contacted yet, but I should be getting a call from you soon. When I got home, I got the call, they said Santa Fe was out of the question. Seems you need to have a doctor on the site, and he needs to recommend you. He then called my Neurologist in Colorado Springs and they recommended Presbyterian infusion center in Albuquerque, seems they have a good connection with them and they have a doctor on the site for the infusion, and post infusion monitoring, sounds good all the way around to me. Presbyterian should be getting in contact with me on Tuesday....

Saw my neurologist in Colorado Springs Friday and she saw I'm doing worse, even after my 5 days of infusions of solu-medrol steroids. It was decided to put me on Tysabri or natalizumab (nat ta LIZ yoo mab). I will wait to see where the company will infuse me, hopefully Albuquerque. I will still need to see my neurologist in Colorado so she can monitor me closely. There are risks to this medicine, i.e. TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), an opportunistic viral infection of the brain that usually leads to death or severe disability. Although the cases of PML were limited to patients with recent or concomitant exposure to immunomodulators or immunosuppressants, there were too few cases to rule out the possibility that PML may occur with TYSABRI monotherapy.

I was to have an appointment with Dr. Fodor tomorrow 2/12/09 in Colorado Springs. I called up there to confirm, they said they were about to call me to reschedule. Dr. Fodor called in with pneumonia today, we decided it would be best to reschedule, she probably won't be in! Made an appointment for 2/27/09 @3:30pm.

Left church and couldn't make it to my car, Kathy Gillespie kindly helped. Stumbled out of my car when depositing money at the bank, took 10min. to get back in my car. Kathy helped me get in the house, then crawled to my Lazy boy chair. I will sit here for a few hours recovering. Probably stood to long at church. A member of our church was having chest pains and 911 was activated. I stood the whole time in case I could be of any assistance, I know that can wipe me out. The member went to the hospital and is now at home.