DW96
Active member
- Joined
- Jul 15, 2021
- Messages
- 32
- Reason
- PALS
- Diagnosis
- 06/2021
- Country
- US
- State
- IL
I was diagnosed the last day of June, in July I decided I wanted to try the Radicava infusions. Everything got started with my neurologist office, finding out if my insurance covers it etc. It does, then they contacted radicava, and then Searchlight in case I need to have any copays covered. Radicava has called me, said they had to set me up with an education person. I talked to her a couple days ago and she said she would setup a time to meet with me virtually. The date she gave me today is like 3 weeks away just to tell me about everything involved?
I have already been waiting well over a month to get things going and after this then I would still have to get the Radicava ordered, I still don't know if I am approved for in home, or infusion center/hospital. I would still need to do 2 treatments by IV before they put a port in.
I'm wondering how much longer I have to wait it out. I'm losing muscle everywhere and every day I'm not on anything other than Riluzole I feel like there's no hope. By the time this even gets going, who knows where I will be at physically.
Danielle
I have already been waiting well over a month to get things going and after this then I would still have to get the Radicava ordered, I still don't know if I am approved for in home, or infusion center/hospital. I would still need to do 2 treatments by IV before they put a port in.
I'm wondering how much longer I have to wait it out. I'm losing muscle everywhere and every day I'm not on anything other than Riluzole I feel like there's no hope. By the time this even gets going, who knows where I will be at physically.
Danielle