Hi guys, yeppers, it is me again.
Just some comments and hoping a good story from someone. I found out today that I am JC positive ( don't know numbers yet, as nurse wants Neuro to tell me)
There was apparently a note on my file that if it was positive that I was not to go on Tysabri. We never discussed this with her, and if the numbers are high of course I would not try it. , but, I know of people who are positive and low numbers and have done very well on Tysabri. I just want o give it a shot. I have to wait now till Wed. when my neuro is in and the nurse will chat with her as to what to do.
Neuro actually did say that, Tysabri would be looking at an MRI and if there are active lesions then it would go, but if not, they may not approve this. So, there is apparently no appreciable change since 2012, but the cord is thinning and flattening C3-6 , but again no enhanced lesions.
So, they think I am stable, so if that is the case, would this not be a good time to take something to keep me stable, especially since we have a new 3 month grandson and 4 yr. old grand daughter. ???
I'm kinda ranting, I'm sorry, but I don't know where to go from here if the answer is NO !! I don't want to try Gilenya as I have heard alot of negatives on it, as well as the Lyrica, and Humira which are basically the same drug, apparently but are used for RA, and Diabetes, and nerve pain.
I'm at a loss, and again, feeling discouraged. ..... here we go again, !!!
thanks, should I be upset, or jumping for joy, I don't know !!!
Candy
:(