Recent content by Zouz

Thinking of you and wishing you the very best. Truly, Zouz

& a Very Merry Christmas to you and all your loved ones.

Thanks Al, This is a great site. The booklets are wonderful. I passed them on to my 13 year old son and he could not stop reading. It helps him know how other kids deal with ALS at home as non of his friend has similar experiences. He said it helped him not feel "alone".

You may want to try a nostrils mask I started the BiPAP two weeks ago during the night and works great. I barely need it during the day. a couple of days, I used when I experienced shortness of breath or got lightheaded but over all it has me running well during the day. I am not using a mask...

Thank you Bethu. I didn't take the pulmonologiost route and I believe you're on to something taking the neurologist route instead. I've been going thru the ALS Center at UCSF. Wonderful people and headed by a great, knowledgeable and compassionate doc. When I first complained about shortness...

I promised that I'd report back and I am now because I see improvement. It has been three days now without Rilutek and already feel better. I would also like to share this: I also started a Bi-PAP machine three days ago as well to help me breath better. Sleeping through the night has improved...

I promised to come back with my Doc's reply. She did this morning and asked me to stop Rilutek. I just did missing my dose today. Shall keep you posted on my progress. Thank you all for your comments.

Thanks Bethu. Great feedback and reassuring to know there are those who stopped taking it when it did not offer them any added quality; a drop instead is what it did. I shall share what my Doc tells me once I have her reply. Thanks again, best wishes and I hope you are coping well.

Thanks Jennifer. I am pleased to see that it has worked well for you and others. It could be that my metabolism does not agree with it. Kind of what other medications do with different people. I have found a good cognac as a night cap great for facsiculations too :)

Rilutek ( yes/no?) Hello. Was diagnosed late Setpemebr but started Rilutek only 12 days ago. Once I did, I could feel some drop in energy. Five days ago I raised the dose to two pills a day (per instructions) and the next morning I could barely get out of bed and as if something sucked all my...

Thank you Al, Zouz is my nickname for a more interesting name; Ziyad. Lebanese origin name meaning too much/excess... and that's is how much facsics I have :lol: Z

Glad to be here! Hello everyone. I am 55 male living in the East Bay San Francisco Area. I've just joined and have been reading some of your posts the past week. Great information to share I must say and glad to join your group. Thank you all. :smile: I've been diagnosed with ALS mid September...