Calling Biogen and complaining last month has not helped in anyway. I've been waiting. The Team Leader I spoke to said the problem was that the packet my neuro filled out initially did not include the confidentiality clause. That was rectified and my neuro would receive the lab kits in approx a month and begin testing. I saw my neuro yesterday and she still has not received the kits.

I hate Biogen but love Ty!!!!!!!!!!!!!!!!!!!!!!! I'm calling Biogen later this morning and complaining again. My neuro and I discussed what to do if I don't get tested because Biogen is dragging their feet. She said I can take a holiday from Ty if I want to but she doesn't recommend it because I'm doing so well. She also does not recommend that I try anything else...especially the oral meds which are new. I'm doing too well on Ty and she would prefer a holiday for 3-6 months.

Infusion #38 tomorrow. It really feels like I'm playing Russian Roulette. It wasn't this stressful when there wasn't a test out there to check the chances of PML. My neuro said we would discuss what to do if I test positive...if I ever receive the blood draw. Has anyone's neuro suggested that he/she stay on Ty even with a positive PML/JCV blood test????? I've only heard about those who have received a negative on their blood draw. If I'm correct the test tells whether or not one is more susceptible to PML.

I'm trying to stay calm and take it one day at a time. If I ever get tested and the test is positive I'll try to make an informed decision then. Hopefully, my neuro will have some info for me.

I'll let you know if I get anywhere with Biogen. I'm sorry I haven't been checking in regularly but, I'm really trying not to think about PML.

Oh...one other thing to mention. I told my neuro yesterday that the longer I'm on Ty the more fatigued I am. We don't know if it's due to the Ty or the fact that I can exercise more and for longer periods of time the longer I'm on Ty. If it weren't for caffeine or Provigil I don't think I could stay awake for more than a few hours...LOL There are days when it feels like the only things I am able to do are exercise, run an errand or two and sleep. I'm too tired to even see friends. When I go to visit my grandchildren for a week or so I don't exercise at all. I still need a nap during the day but I feel that playing with them is all the exercise I can handle...LOL

hugs to all....I hope everyone has a wonderful day,
Shayna