Back from neuro visit

[dldred]

Hi everyone,
We just got home from my moms neuro appointment and he agrees about the ALS diagnosis. We did learn a lot from him and we are scheduled for an ALS clinic in September or October. She is looking forward to the clinic and is relieved to finally have a Dr who is so understanding and knows so much about this disease. She is going to start on some different antioxidants and is going to try rilutek and see how it works for her. He says she is in the early stages and believes rilutek would be a good option for her. Thank you everyone for your support and prayers, please keep them coming. Sorry everyone I guess you have to put up with me for a long, long, long, long, long, long. long time.


PS: I would like to hear from anyone who has had good results from rilutek, I have heard only bad things.

Thanks
Dana

 

[pamnandy]

Hi Dana,

Andy was diagnosed in 2001 and his ALS doctor started him on Rilutek right away. He had no negative side effects, and kept taking it up until his doctor said it was no longer effective. I don't know if it helped or if it didn't. Since he tolerated it just fine, our thought was that it couldn't hurt! He is still with us now, so I would say Rilutek might have played a part in that. Hard to tell, since everyone is so different, and this horrid disease attacks each victim differently.

Blessings to you and your family,
Pam

 

[BarryG]

Hi Dana and Pam, we have had many discussions about Rilutek on the forum in the past and unfortunately there is no clear answer as to whether it works or not or whether a PALS will suffer any side effects or not. I have been on it since about May of 2008 and so far I have had a progression of my bulbar symptoms so that it is very difficult for me to eat and talk but limb onset has been minor. I don't know how I would know if it is helping or not because it's not like you feel better (or anything different at all ) when you take it. As far as I am concerned it doesn't cost me much, I crush it and put it in my peg tube so it is not difficult to take, and I don't have any side effects from it so I will keep taking it. So I guess for me I don't have any good news or bad news about it (except that no news is good news:grin

BTW Dana, sorry about your mom's diagnosis. Even though I wish you didn't have to be here I am glad that you are part of the forum family.

Barry

 

[dldred]

Thanks Barry and Pam, I really appreciate the info. I am glad to be a part of this forum
and this wonderful sometimes crazy family. Hey wait a minute it is just like my real family.
I have learned so much from you and will continue to do so I am sure.

Thanks again

Dana

 

[Al]

Hi Dana. I took Rilutek on and off for almost 6 years. It gave me a few stomach issues but overall I'd vote to take it.

AL.

 

[dldred]

Thanks Al, she is going today to get that and her antioxidants, lets hope it helps her. I appreciate your help.

Dana