- Feb 28, 2011
- Loved one DX
I was so hoping my 1st post would be my last....however, we met with the neuro again Wednesday for Scott's muscle biopsy results. Test results simple supported the doc's ALS diagnosis---UGGH! Doc had already told us after doing the EMG that this had been going on for quite a while...(I just thought he/I/we were getting a lil older and gettin' tired from chasing the 3-foot terrorist masquerading as our grandson). Anywhoooo....this situation stinks. Scott is a fishing fanatic and routinely fishes in tournaments....it breaks my heart to see him have such difficulty in trying to tie on lures as atrophy has already developed in his hands. I despise the fatigue and nightly cramps he is experiencing. Sticker shock so to speak when I went to pick up his 1st month's supply of Rilutek(?) Are you kidding me---$1,183.99 for one month. Thank goodness we've got great health insurance but seriously.....! Anyway, while I was hoping that I wasn't gonna be a long-term member I guess I'm gonna join ya'll on the ALS journey! I would sincerely appreciate all words of wisdom and advise!