kmgy
Active member
- Joined
- Dec 22, 2007
- Messages
- 40
- Reason
- Loved one DX
- Country
- US
- State
- pa
- City
- somewhere in
My father had difficulty buttoning a shirt in the summer of 2003. In the fall of 2003, he went to neurologist who did tests, thinking he might have had a stroke -which came back negative. He began slurring in the fall of 2003 after a few beers, and the slurring progressed to when he was tired, and then the slurring was consistent. He was also losing weight and having symptoms in his hand - they thought it was his heart and he had a stent put in January 2004. He continued to fall asleep and was very tired during the day. He passed out in april 2008, and was taken to hospital where he spent 3 days. no one had any idea, so he was discharged. saw cardiologist in may who thought it could be the lipitor, and took him off. symptoms continued and finally cardiologist referred him to different neurosurgeon who thought he had als based on hearing his speech prior to walking into examining room. we were referred to als specialist for additional tests and he was diagnosed in july 2004. By the time he was diagnosed, he was immediately placed on a bipap, and had lost 50 lbs due to swallowing/eating issues. His breathing fvc was in the60s. He passed away 5 months later in december 2004 right after xmas. he walked up until he passed without difficulty. It was the diaphragm/breathing that got him. Extremely fast progression. it was like a whirlwind with nobody knowing anything, and by the time they diagnosed him, it was too late for almost any intervention/peg etc. It is truly amazing that two different neurologists did not pick it up, and that he spent days in the hospital and they still could not figure it out. I infuriates me that he was not diagnosed sooner, so that he could have had the opportunity to learn more about the disease and have the opportunity to undergo procedures to extend his quality of life earlier. when we were finally referred to teh als clinic, the clinic staff was wonderful and assisted in every way.