Samkl
Distinguished member
- Joined
- Nov 1, 2019
- Messages
- 143
- Reason
- Lost a loved one
- Diagnosis
- 08/2019
- Country
- AU
- State
- NS
- City
- Wollongong
Well, we’re still on the roller coaster. My brother is 5 and a half weeks in to his IVIG treatment, and he doesn’t feel a great deal has changed. He is maintaining his weight with a lot of harassment to eat from everybody, but he is thin. He mentioned to me that his hands symmetrically weaken, then appear to strengthen for a few days. He’s also waking up with headaches a lot of mornings. Lung, diaphragm and heart testing reveal no issues, and he is waiting for the results of a CPET he had 3 weeks ago (yes, 3 weeks - go figure). His fasciculations continue all over. Given his pulse rate is frequently up over 100 ( they said he was mildly tachycardic) I wondered about respiratory acidosis, as a cause of his shortness of breath. My admittedly uninformed opinion is he should be on Riluzole now, even though he doesn’t have a firm diagnosis, and he should be using a bipap machine overnight in case he’s not clearing co2 overnight, even though blood gases (but not arterial) say his O2 levels are ok. To think I used to get upset when my kids left dirty clothes on the floor......
A belated Happy Thanksgiving to those of you in the US. What a lovely tradition that is.
Best,
S x
A belated Happy Thanksgiving to those of you in the US. What a lovely tradition that is.
Best,
S x