Compass Rose
Distinguished member
- Joined
- Jun 20, 2012
- Messages
- 133
- Reason
- Loved one DX
- Country
- US
- State
- WA
- City
- Seattle
Hi all.
My dear brother was diagnosed with ALS three months ago. He had an appointment not long after that to do some pulmonary tests and was scheduled to see his neurologist this week.
But he got a voicemail from the neurologist's office saying the appointment was canceled because he'd already had an EMG (the one that confirmed his diagnosis three months ago). He called and left a message with the neurologist's office but hasn't heard back yet.
My brother isn't overly assertive or one to ask a lot of questions, unlike me. I'm hoping that that's how I can help him and my sister-in-law as things progress, by asking questions and getting as much information as possible.
So my question is this: after someone is diagnosed with ALS, what are typically the next steps? Should there be some follow-up and monitoring with a neurologist to see how/if the illness has progressed? Or do people who have been diagnosed just wait until the symptoms start increasing?
This disease is so awful and surreal; I sometimes think maybe my brother doesn't really have it, because other than some weakness in his hands, he seems okay. I just wish things could stay the way they are at the moment.
My dear brother was diagnosed with ALS three months ago. He had an appointment not long after that to do some pulmonary tests and was scheduled to see his neurologist this week.
But he got a voicemail from the neurologist's office saying the appointment was canceled because he'd already had an EMG (the one that confirmed his diagnosis three months ago). He called and left a message with the neurologist's office but hasn't heard back yet.
My brother isn't overly assertive or one to ask a lot of questions, unlike me. I'm hoping that that's how I can help him and my sister-in-law as things progress, by asking questions and getting as much information as possible.
So my question is this: after someone is diagnosed with ALS, what are typically the next steps? Should there be some follow-up and monitoring with a neurologist to see how/if the illness has progressed? Or do people who have been diagnosed just wait until the symptoms start increasing?
This disease is so awful and surreal; I sometimes think maybe my brother doesn't really have it, because other than some weakness in his hands, he seems okay. I just wish things could stay the way they are at the moment.