Paigeyorr
New member
- Joined
- Sep 28, 2022
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NC
- City
- Spring Lake
Hello everyone, thank you all so much for your patience and kindness when it comes to those of us asking questions regarding questionable symptoms.
To start I am a 25 year old female (I have read stickies and understand that ALS in my age group is already extremely rare, with respiratory onset being the rarest type)
That said, exactly 1 month ago I began having full body muscle fasciculations that came on full force out of nowhere (I understand that twitching as a symptom can mean absolutely nothing) and a week after that I developed shortness of breath that is constant and has persisted since onset. No matter if I’m sitting down doing nothing or up and moving around I am experiencing a feeling of air hunger and in order to get a full deep breath in I have to really dig deep and use accessory muscles to get a full deep satisfying breath (when I do this you can very visibly see my neck muscles pulling). Shortness of breath is worse when laying down as well so I have been propping myself up to sleep. I am also experiencing perceived neck weakness. I was able to get into a neurologist for an EMG test in which they tested 2 muscles on my right arm, 2 on right leg, 4 right paraspinal muscles, and my right SCM muscle. Results of the EMG were normal for all muscles tested.
My question is, is the normal EMG of these muscles sufficient to rule out respiratory onset? Or would only an EMG of the diaphragm be enough to rule that out if this is still early on?
I have a pulmonologist apt scheduled but they didn’t have an opening until February 2023 at Duke where I receive my neuro care so I’m trying to get my referral switched to somewhere else in order to get an earlier apt.
Thank you so much.
To start I am a 25 year old female (I have read stickies and understand that ALS in my age group is already extremely rare, with respiratory onset being the rarest type)
That said, exactly 1 month ago I began having full body muscle fasciculations that came on full force out of nowhere (I understand that twitching as a symptom can mean absolutely nothing) and a week after that I developed shortness of breath that is constant and has persisted since onset. No matter if I’m sitting down doing nothing or up and moving around I am experiencing a feeling of air hunger and in order to get a full deep breath in I have to really dig deep and use accessory muscles to get a full deep satisfying breath (when I do this you can very visibly see my neck muscles pulling). Shortness of breath is worse when laying down as well so I have been propping myself up to sleep. I am also experiencing perceived neck weakness. I was able to get into a neurologist for an EMG test in which they tested 2 muscles on my right arm, 2 on right leg, 4 right paraspinal muscles, and my right SCM muscle. Results of the EMG were normal for all muscles tested.
My question is, is the normal EMG of these muscles sufficient to rule out respiratory onset? Or would only an EMG of the diaphragm be enough to rule that out if this is still early on?
I have a pulmonologist apt scheduled but they didn’t have an opening until February 2023 at Duke where I receive my neuro care so I’m trying to get my referral switched to somewhere else in order to get an earlier apt.
Thank you so much.