Finally got the enrollment form from my neuro. Went in on Friday, tumbleweeds blowing around and receptionists playing solitare on computer (holday weekend and neuros probably already in Nantucket). Respectfully asked for form and was told it had to be mailed to my home and stonewalled when asked why I couldn't just pick it up then and there.
My friend called (who could have been anybody) and was told that the neuro said not to give the form to me until we had a discussion. So, they basically had no intention of mailing it to me. As the owner of the Y chromosme, he explained that we talked about Ty for a long time and I was able to get the form emailed to me yesterday and mailed today.
-Biogen was extremely helpful on the phone, saying that they would get me in patient assistance if my insurance didn't cover. I said my neuro stated they may want to start me on an inferior treatment for economic reasons. He said this was called "step therapy," but promised that it could be bypassed. They can start a file for you to expidite things even if you are waiting for an appt. and will also deal with your insurance co.
-As I said before, I am JC neg and this is a first line theray, but I suspect I have Gilbert's Syndrome because of my familial history and billirubin levels which are always elevated. I understand they monitor your liver function, so I hope I don't have a hepatoxic reaction and I can continue to take Ty. I also tried to commit suicide in HS but have been a happy and productive adult since. I basically don't want to disclose anything that will jeapordize me getting Ty.
I went to have dinner with a friend and he said I seemed really happy and I told him about Ty and showed him some research and the Ytube vids with people dancing and getting their cognitive function back. He asked why it wasn't called a cure and I said probably the way that insulin for diabetics isn't a cure but a maintenance drug, but it was a good analogy because those people were waiting for a definitive cure (stem cell therapy looks like a good lead) and injecting just like we are. I'll post occasional updates in this thread and I will even make a Ytube vid of my own if my results are dramatic.
My friend called (who could have been anybody) and was told that the neuro said not to give the form to me until we had a discussion. So, they basically had no intention of mailing it to me. As the owner of the Y chromosme, he explained that we talked about Ty for a long time and I was able to get the form emailed to me yesterday and mailed today.
-Biogen was extremely helpful on the phone, saying that they would get me in patient assistance if my insurance didn't cover. I said my neuro stated they may want to start me on an inferior treatment for economic reasons. He said this was called "step therapy," but promised that it could be bypassed. They can start a file for you to expidite things even if you are waiting for an appt. and will also deal with your insurance co.
-As I said before, I am JC neg and this is a first line theray, but I suspect I have Gilbert's Syndrome because of my familial history and billirubin levels which are always elevated. I understand they monitor your liver function, so I hope I don't have a hepatoxic reaction and I can continue to take Ty. I also tried to commit suicide in HS but have been a happy and productive adult since. I basically don't want to disclose anything that will jeapordize me getting Ty.
I went to have dinner with a friend and he said I seemed really happy and I told him about Ty and showed him some research and the Ytube vids with people dancing and getting their cognitive function back. He asked why it wasn't called a cure and I said probably the way that insulin for diabetics isn't a cure but a maintenance drug, but it was a good analogy because those people were waiting for a definitive cure (stem cell therapy looks like a good lead) and injecting just like we are. I'll post occasional updates in this thread and I will even make a Ytube vid of my own if my results are dramatic.
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