I had infusion #36...I think.....on Friday,August 20. It was stressful because although I had the card with my appointment listed on it at the infusion center they had me listed for September 3
After a lot of begging and pleading they finally gave me the infusion. They had a bag of Ty for a patient the following week and gave it to me instead. They said they had plenty of time to order Ty for that other patient. I left for Califoria after my infusion so that I could be here for my grandson's first day of kindergarten. I'll go back home on August 30.
My neuro still has not received the viles for the stratisfy 2 test for PML. They don't know when they will receive the viles but will call me as soon as they do. I'm really fed up with this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've been fending off another sinus/ear infection for the past two weeks. So far I've been lucky and have not needed the antibiotics but, it's just a matter of time before I need to begin them again. My neuro has no diea why Biogen has not sent out the viles for the blood draws.
RW, I'm glad you had fun. Grammie, I'm thrilled that you're doing so well. Pink, I wish I knew what to tell you. I've been getting so much different information about the oral med I don't know what to believe. I don't see my neuro again until October. I'm going to ask her then what she thinks about it.
If I don't make it into thje stratisfy 2 program before it closes I may say the heck with it and go off the Ty. I I don't like feeling like I'm playing Russian Roulette. Ty has been good for me but I don't like knowing there is a blood test to see which patients are more susceptible to PML and I may not be able to get it because Biogen is dragging their feet. From what I have read those patients who are diagnosed with PML quickly have a much better chance of surviving with little disability. But, that doesn't change the way I feel about the blood test. If I don't receive it I don't think I will remain on Ty. This is simply too streesful
I'm sorry but I'm just feeling extremely stressed over everything that concerns m.s. and the only thing keeping me sane is the time I'm spending with my grandchildren.
hugs to all
,
Shayna