Mother recently diagnosed with ALS-searching for support/information

[Devina25]

Hello everyone,
My mom was just recently diagnosed with ALS in January 2021. Her symptoms started back around June 2020 and progressed very quickly. I have a few questions that I am hoping you all will help me out with.

She was denied edaravone because but my family and I are looking into getting it privately, but we have a few questions/concerns.
What were some of your side effects after taking the drug?
Did you notice a positive change or did it get worse?
How do you feel now? Do you think the drug was worth the effects on your body?

Any help would be appreciated.
Thank you.

 

[Nikki J]

Sorry you have to join us. I am sure some will chime in here but please also search radicava on this site. Lots of posts about it that will give you information from people who may not see this thread

 

[Devina25]

thank you

 

[lgelb]

A sad welcome, Devina. Ask us anything.

Why was your mom denied Radicava?

Best,
Laurie

 

[lisa g]

Like Laurie asked, why was she denied Radicava?
I have been taking infusions for the last year. As far as side effects, I haven't noticed anything out of the ordinary. I do make sure that I hydrate during the infusion, I have heard of people getting headaches during. As far as noticing any changes positive or negative it's hard to say. No-one can predict progression. I will say in my case I haven't noticed any dramatic progression since using it. Is that a positive? It's hard to say.

 

[GXTrex]

My dad's insurance approved Radicava, but even then it cost about $4000 a month so he opted not to do it.

 

[Firefighter58]

What hospital or clinic are you dealing with? I deal with McMaster in Hamilton and find their advice one hundred percent, My advice would be to follow the directions of your clinic, They are there to help you and guide you not to sell you anything.