MVFinVA
Distinguished member
- Joined
- Sep 5, 2017
- Messages
- 116
- Reason
- Lost a loved one
- Diagnosis
- 05/2017
- Country
- US
- State
- VA
- City
- S
My husband was diagnosed in May 2017, but we can look back and see symptoms that we didn't recognize in August 2016. He had his first ALS Clinic visit in June 2017. At that time his Forced Vital Capacity (FVC) was 3.9 and they said his lungs were great. It dropped to 3.6 in October and 3.3 in January. He was just tested today and it had dropped to 2.4. I had anticipated it was going to drop. The FVC was the only test they could get accurate results on today because he has FTD also and has trouble following through on directions - he couldn't keep his lips sealed.
His symptoms are all upper body - legs are fine. He is about to receive a feeding tube on Tuesday due to difficulty eating and weight loss.
From an entirely un-medical view, just a wife's of 30 years gut feeling - the progression seems to have really sped up in the last three months.
Any insight into the lung function numbers would be greatly appreciated.
Mary
His symptoms are all upper body - legs are fine. He is about to receive a feeding tube on Tuesday due to difficulty eating and weight loss.
From an entirely un-medical view, just a wife's of 30 years gut feeling - the progression seems to have really sped up in the last three months.
Any insight into the lung function numbers would be greatly appreciated.
Mary