Hi Andrea,
Just wanted you to know my mom came home on friday and she is under Hospice Care now. Her Dr. said he thinks that she has only 1 week left, (how does he know?) I know in my heart she doesn't have much time left but I find it hard to believe she only has a week left. I just wanted to send you a message because you were always so kind and quick to respond to my posts... My mom has been so strong for 3years, I don't know how she did it because she never felt sorry for herself, she cared more about how we felt and then herself. I know this is a difficult time for you too, I hope your husband is doing ok....my heart goes out to you also. I just wish more people knew about ALS because we need to find a cure. Take care, Debra
Karin, Jim has bulbar onset, with limb involvement. We did also see Dr. Graves. Dr. Graves trained Dr. Abi. Jim has acute denervation, brisk reflexes, an elevated palate, fasiculations, loss of strength and loss of mobility. His emg was clear that it wasn't CIDP, or any other treatable neurological disorder. We have seen 3 neuros, one here in Thousand Oaks, Dr. Abi, and Dr. Graves. They all say it is 100% ALS.
I so appreciate your reply - May I ask whay your husbands presenting symptoms were? I am really scared - and I sympathize for you - this is truly a horrible diease.
I love Dr. Abi adn I know that she would be honest with me - did your husband see Dr. Michael Graves at UCLA?
