azmully
Member
- Joined
- Jun 29, 2020
- Messages
- 12
- Reason
- Lost a loved one
- Diagnosis
- 11/2019
- Country
- US
- State
- AZ
- City
- Phoenix
Hi everyone,
I was here on the forum for questions about my larger family's history with ALS (c9) and my own personal situation back in June/July of this year. I shared my EMG on this forum back then and was waiting to be seen by the Barrow Neurologist here in Phoenix, AZ.
In August I was diagnosed with ALS by my neurologist based on my limb onset, clinical weakness and EMG. A few weeks later the DNA test confirmed the C9 gene.
Fast forward to today and it's been a whirlwind of emotion and getting things arranged. I live just 2 miles from Barrow and they are part of the Healey ALS Platform trial and I just started this Monday. I was randomly assigned zilucoplan and have 1:3 of change of getting the drug Vs. the placebo. This is only 24 weeks so a short trial, ideally I think a C9 focused trial would be best but this is very close and easy for me and I'm very happy with the team.
Has anyone else taken zilucoplan? Just started the injections this week.
Thanks,
Mike
I was here on the forum for questions about my larger family's history with ALS (c9) and my own personal situation back in June/July of this year. I shared my EMG on this forum back then and was waiting to be seen by the Barrow Neurologist here in Phoenix, AZ.
In August I was diagnosed with ALS by my neurologist based on my limb onset, clinical weakness and EMG. A few weeks later the DNA test confirmed the C9 gene.
Fast forward to today and it's been a whirlwind of emotion and getting things arranged. I live just 2 miles from Barrow and they are part of the Healey ALS Platform trial and I just started this Monday. I was randomly assigned zilucoplan and have 1:3 of change of getting the drug Vs. the placebo. This is only 24 weeks so a short trial, ideally I think a C9 focused trial would be best but this is very close and easy for me and I'm very happy with the team.
Has anyone else taken zilucoplan? Just started the injections this week.
Thanks,
Mike