BlueEyesOhio7

Hi BlueEyes, I've never paid that money either, so it's not that. You can't send Nikki a visitor message because she has it turned off again. I'm going to send a PM to David, the site owner for you and ask about it. I do remember it took just a little while to get going for me, it's all about ensuring we don't get spammed which I appreciate, but I know that new CALS here often need some private support.
I will see if David can get it solved, fingers crossed xx

Hi BlueEyes,
maybe check your User CP (up near the top left) and see if you have any options for PM?

If not, try sending a visitor message to Nikki (let me know if you can't as she may have turned that off again which she has done before) asking her about it. She is lovely and really helpful but as she has been recently diagnosed she is battling her own issues as well.

Tillie

Thanks, Kim! I really appreciate the info. I am still kinda thinking about the the Rilizole (Rilutek) thing. I'm not sure I'm going to start it. For one thing it may cause liver probs. I have had liver probs in the past – will check with my gastro-Doc about that. Will talk to the Doc about clinical trials. This is all SO new!

Stay in touch, Lynne

ynne

Hi Blueyes,
Welcome to the forum but so sorry for your need to be here. My dad will be 80 in September and has ALS. It was 2 years in May since his diagnosis but he had symptoms for at least a year before that when we didn't know what was going on. My dad is in a clinical trial of a drug called Acthatar (sp?) but we aren't really sure if it's helping or not. But, he hasn't really progressed much since being on it. Is there perhaps any clinical trial they you could sign up for? Also, Boost and Ensure are going to drink to help get you proper nutrients. Take care, Kim