lynncm
New member
- Joined
- Mar 14, 2024
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 02/2024
- Country
- US
- State
- CO
I was diagnosed in Feb 24, limb onset after about six months of symptoms. I was placed on riluzole and methylcobalamin (both still on) and Relyvrio (obviously now stopped). My ALS-specialist neurologist said he would put me on edaravone if I wanted, but he would not recommend it. This is because he thinks the data are incredibly weak for this drug. I have very good insurance, so cost is not the issue. I have taken his advice and not started the medication, but I've read some of the studies and wonder if I've made the right choice. Has anyone else been given this advice by their ALS specialist? What are your thoughts here?