You're welcome Brenda. I hope your insurance does cover growth hormone (gh) if you choose to go that route. The research on GH isn't very conclusive, one can see from any quick google search on it, but at this point there is just NOTHING out there. My husband, unfortunately, is in the most rapidly progressing "class" of ALS, he has remained in the 0-5% range on the ALS FRS scale pretty much the entire time since diagnosis. He has been on Lithium since the beginning, as well as rilutek, and now Increlex. I do know that Lithium definately helps with his swallowing, he had a period off of lithium when his blood levels suddenly shot up, and we noted immediately that he struggled with water, ice cream, etc. Back on Lithium at 600mg daily he is doing better with water, etc.
While his progression has been alarming, at least to me, it does seem to have slowed. In the first 6 weeks of his symptoms he lost the ability to swallow pills, much use of his left arm, and began to have weakness in his right leg. That was Jan this year. Now, end of July, he is still without a PEG, he is still walking, (very shaky, but walking), and still has some function of his left arm. His right leg and arm remain without loss of strength, however he has fasciculations of his right shoulder, and I did see some in his forearm over this weekend. I am only reporting our experience to help anyone who may want to pursue any of these therapies... it definately isn't curing it, but I do think we have seen some slowing?
Andrea - wife of Pals Jim
