First appointment at the RMmsC

[lindaincolorado]

Yesterday I had an appointment at the Rocky Mtn ms Center. Great Dr. very knowledgeable YAY!!!

He gave me the pml odds at 4 years of Tysabri treatment. They are 1/787. He said it appears they are even better after the 4 years, just not available yet... probably back to 1/1000. There is another scale of pml odds that give still better odds... I can't remember the names of the statistic scales

He wants me to only have one MRI a year, no reason for CD4 test (only works for HIV), Prokarin he calls a hoax and he wants me to go back to every 4 week infusions-said no stats that waiting longer lessons pml risk.

I am excited to be with this Dr and the entire set up of the RMmsC.

[Myoak]

Congrats on all the good news!

May I ask if you are JCV antibody pos or neg? And was that status factored into the PML risk #'s given you? Or, was the risk he presented for the general patient population at 4 years of Tysabri regardless of JCV status?

Thank you for any response you may give. The RMMS Center has a great reputation, you are fortunate indeed! Blessings to you.

[lindaincolorado]

sorry Myoak, forgot to say that I've had 55 infusions and yes, I am jcv positive. I have not had an immunosuppressant.

[LL60]

Linda - I am jealous! I get their magazine and have read many articles on their website. I send them money when I have a little extra. They all sound so supportive.

Will you stay in CO year round now?

1/787. That still means 786 don't get PML. I am so glad Tysabri works for you. Next month will end my second year. I am doing well too with it.

[lindaincolorado]

LL60, I am glad you are doing well on Ty
I will be year round in CO now. I am hoping and praying this will all be to my good...
I wish all patients could have a knowledgeable/great Doctor!