- Feb 12, 2008
- thousand oaks
Well, my husband and I spent the day at the ALS neurology clinic at Cedars Sinai hospital yesterday. After a very long day of testing, consults, etc, the doctor told my husband that she couldn't find any other possibility, so it is ALS. He has nerve damage in his arms and torso, also his hip flexors. He has non stop visible fasciculations of his left arm and beginnings of it on his right that are visible, as well as recordable fasciculations of his back muscles, but aren't visible. Needless to say, we are both overwhelmed, afraid, sad. She gave him a prescription for the medicine that is supposed to slow progress, and she is starting a clinical trial next month that she will put him on. We are both very scared, sad, etc. I don't know what to expect from here, or really what to do. There are some really obvious things, she suggested he not work more than 4 hours a day, he is a contractor so we are putting plans in immediate place to help him there, we are going to sell our multi story house for a smaller, cheaper single story. Other than that... we are just lost and scared in dark dark woods. I must say that I feel in good hands at the clinic, the doctors and staff were compassionate, and gave us a lot of info, maybe too much. We do go back in 2 weeks to go back thru with the msw, dietician, speech therapist, etc just to reinforce what they told us and also see the docs again. .... Thank you all for the feedback you provided prior. You are all my heros... God bless us all...