Well, met with the neurologist today - both neuros (and their teams) have diagnosed Jim has ALS & FTD. Only "hanging point" is the slim chance something shows up in today's spinal tap. (The neuro said straight out he doesn't expect it to.) They took about 15ccs of spinal fluid for various test including 3ccs for research purposes which we ok'd.
Overall, I was very impressed by how well these doctors worked together. Turns out they are working on ALS medication research and the other neuro was in Germany today presenting the medication. They are hoping for a clinical trial - we'll see. Now the neuro he saw today will fly back to Vegas but will continue to meet with us on his trips back to Cleveland (he is currently opening the Alzheimers Clinic there.)
Jim didn't handle the thought of the tap well - made himself sick with anxiety - however once it started he was ok. Even joking that he felt like he was on an episode of House and that if he was going to be a guinea pig he wanted a hamster wheel and a running ball for Christmas.
The Xanax he was given sufficiently wore him out (that and the fact he & my mom were up with sick little Ruthie most of the night!!) Mom said he took very good care of Ruthie all on her own - through multiple bouts of throwing up.
He was also started on Rilutek today and they will re-evaluate his Baclofen in January during his ALS clinic visit.
The believe the pain in his side may be the result of muscle atrophy - though that is not conclusive.
He is soundly sleeping - I on the other hand have been up for over 23 hours and am still strangely awake! All in all I am doing ok - though I only have that little sliver of denial left!
No comments:
Post a Comment