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

Ready?

My phone rang this morning at 8:00 a.m.
I am usually asleep or on my way to bed at that time but today I was right next to the phone so I grabbed it.

It was my doc. He said "I NEVER call patients to give them test results, but I just had to call you and share this. You are my first patient who was tested for the JC virus who had negative results"

I was speechless and he started laughing. He says it's the first time I ever had nothing to say.

I let out a whoop that all the summer people in my neighborhood must have heard and did some of this:



He said he remembered that I told him I would be his first negative patient when he did the draw for the test. I am the only one who has come back negative so far and he was getting discouraged by all the positive results that he had to tell people about.

He cautioned that I have to remain vigilant and that we don't know what the test means yet and that there is a 2.5% false negative rate, we don't know how the virus is transmitted, etc, etc, etc. and that the next test will tell us more, but that as far as he is concerned, there will be no drug holiday if I don't want one!!!!

I told him that was a good thing becaue I was having a hard time with the fact that I had agreed to let him be the doctor if I was positive.

I just had to share! Now I am going to bed cause I have a date with the Yabbit this afternoon. She has an appointment with my doc and we are going to meet and eat afterwards-- our favorite activity!

I wish you all a solid, heartstopping moment of overwhelming joy today, like I had this morning!

Yabba dabba do, so glad for you!!!!!!

What outstanding news
I, too, am so happy for you!!!
I am considering not being tested... as I only want to hear good news
Linda

Get the test .... and then cover your ears. More information is always better.

Yeah for RW!!!! This calls for a party. I hope you are out celebrating!! I'm very happy for you. Yeah!! Yeah!! Yeah!! Yeah!! I could keep going.....

RW, I'm so happy for you!!!

...but, I haven't been following this Ty thread and I don't know what the JC test is.

But if you're excited, then I'm excited for you, friend! Hope you enjoyed your meet and eat with the Wabbit.

RW, I'm so happy for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I hope we all test negative...if we have a chance to be tested. My neuro is still waiting for Biogen to co-operate. I'll be calling my case manager at Biogen this afternoon.

huge hugs to all ,
Shayna

Shayna--let us know what your case worker says and any other tidbits you find out!

Hooray RW!!