- Joined
- Nov 6, 2022
- Messages
- 14
- Reason
- CALS
- Diagnosis
- 11/2022
- Country
- US
- State
- TX
- City
- Sugar Land
We went to clinic for the first time today. Lots of tests but nothing different from was done before. My husband was a little frustrated about that. We thought there would be a bunch of different tests like a muscle biopsy or something like that. He also wanted to know how long he has. Dr said he doesn’t make predictions like that (not his exact words but something like it). Personally was thankful because I don’t want to lose hope as we get close to a death date set by the doctor.
There were a lot of figures and terms tossed around when the doctors were in the room. I caught that his als fsr (?) was 33. Is that really bad to start? My husband was dx in Nov 2022 after having various issues for 2 years, and he now seems to be losing function quickly. I couldn’t catch the breathing measures but overall his breathing was a concern but he didn’t qualify for a bipap yet. Based on what I read on Dr Google breathing problems are the “beginning of the end” but the doctor said that wasn’t necessarily true. The Dr was very positive and told my husband that he appeared down, so I’m not sure if the Dr made the statement about breathing to keep our spirits up. Tomorrow we speak with the team again to answer our questions so hopefully we get more info then, but I’m just so overwhelmed with it all. On a positive note, the staff was very friendly, which made the day go by quicker.
There were a lot of figures and terms tossed around when the doctors were in the room. I caught that his als fsr (?) was 33. Is that really bad to start? My husband was dx in Nov 2022 after having various issues for 2 years, and he now seems to be losing function quickly. I couldn’t catch the breathing measures but overall his breathing was a concern but he didn’t qualify for a bipap yet. Based on what I read on Dr Google breathing problems are the “beginning of the end” but the doctor said that wasn’t necessarily true. The Dr was very positive and told my husband that he appeared down, so I’m not sure if the Dr made the statement about breathing to keep our spirits up. Tomorrow we speak with the team again to answer our questions so hopefully we get more info then, but I’m just so overwhelmed with it all. On a positive note, the staff was very friendly, which made the day go by quicker.