Hi, Kim --
>Max- Ok.. well, I guess there really isnt any reason to rush.. he just started the deanna protocol and coconut oil.. he started taking rilutek but it seems to weaken his right leg all of the sudden, so he stopped... I am still not sure if that drug is good or not.
I have clinic next week and I am going to ask about doubling the Rilutek (new research).
Did you ever get in to see him or are you still waiting until June?
>So, I guess we will just wait. The ALS association called me and they work with Dr. Hirati... and she says he only works with ALS patients etc.. more personal etc... but I hear more about dr. appel.
I was there this week to start the Fingolimod study and met with several of the team again. efficient, but too many tests
>Thanks again, and so sorry you have this disease. KIM
Me, too, but it is what it is ... hang in there!
Max
>Max- Ok.. well, I guess there really isnt any reason to rush.. he just started the deanna protocol and coconut oil.. he started taking rilutek but it seems to weaken his right leg all of the sudden, so he stopped... I am still not sure if that drug is good or not.
I have clinic next week and I am going to ask about doubling the Rilutek (new research).
Did you ever get in to see him or are you still waiting until June?
>So, I guess we will just wait. The ALS association called me and they work with Dr. Hirati... and she says he only works with ALS patients etc.. more personal etc... but I hear more about dr. appel.
I was there this week to start the Fingolimod study and met with several of the team again. efficient, but too many tests
>Thanks again, and so sorry you have this disease. KIM
Me, too, but it is what it is ... hang in there!
Max