- Joined
- Aug 20, 2022
- Messages
- 6
- Reason
- PALS
- Diagnosis
- 10/2022
- Country
- US
- State
- VA
- City
- Madison
Hello to all and a thank you for your support. Its been some time since I have last posted but you all have been very supportive in the advice you've given to me (and to others coming to this community for the first time. I was diagnosed in Oct 2022 and had my first clinic (also Oct 2022). This is limb onset as I had gradually lost use of my left wrist/hand as well as left foot drop during the Spring/Summer of 2022.
Among other testing at first clinic, I had a full respiratory/pulmonary workup. At that time, my FVC was 109%, my FEV1/FVC% was 70% and my MEP was 60 CMH2O. Not bad numbers at all and I didn't notice any respiratory symptoms.
Updating to 4 months later, this week was 2nd clinic. Since New Year's, I have noticed more fatigue and obvious shortness of breath. I've been trying to keep everything in our lives slow and steady- so as not to over-stress my body...avoiding stairs, sitting instead of standing. We were a bit freaked out by the fact that in just a 4 month period, the respiration had been so affected. 2nd clinic numbers in Feb 2023; FVC=35%, FEV1/FVC%=58% and MEP=10 CMH2O. Neuro also noted that I've moved from 40 to 33 on the ALSFRS-R scale in those 4 months. Hopefully, this progression will slow down.
I do have a question... They have put in the scripts for non-invasive positive pressure ventilation, cough assist and PEG. In the order, the Doctor mentioned that "Bipap was considered but ruled out due to its inability to support max/min IPAP settings >25cm H2O." I'm not sure what all that means but thought that Bipap was the standard for ALS patients. Thanks again to everyone.
Among other testing at first clinic, I had a full respiratory/pulmonary workup. At that time, my FVC was 109%, my FEV1/FVC% was 70% and my MEP was 60 CMH2O. Not bad numbers at all and I didn't notice any respiratory symptoms.
Updating to 4 months later, this week was 2nd clinic. Since New Year's, I have noticed more fatigue and obvious shortness of breath. I've been trying to keep everything in our lives slow and steady- so as not to over-stress my body...avoiding stairs, sitting instead of standing. We were a bit freaked out by the fact that in just a 4 month period, the respiration had been so affected. 2nd clinic numbers in Feb 2023; FVC=35%, FEV1/FVC%=58% and MEP=10 CMH2O. Neuro also noted that I've moved from 40 to 33 on the ALSFRS-R scale in those 4 months. Hopefully, this progression will slow down.
I do have a question... They have put in the scripts for non-invasive positive pressure ventilation, cough assist and PEG. In the order, the Doctor mentioned that "Bipap was considered but ruled out due to its inability to support max/min IPAP settings >25cm H2O." I'm not sure what all that means but thought that Bipap was the standard for ALS patients. Thanks again to everyone.
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