SulleyAnneC
Member
- Joined
- May 19, 2021
- Messages
- 14
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- IT
- State
- IT
- City
- Milan
Hi all. My previous post: Hoarse Voice and reduced MVV (50%) is not opened for replies.
I wanted to give an update on my situation, and ask for advice. Your honest opinion. So as I said I was scheduled for a neurological visit in september, but I got scared and canceled it, now it's rescheduled, and I have it in a few days. I know it's childish but I got really scared.
I don't know I thought I might just "shake it off" and not think about it anymore.
But I got weaker.
In the meantime I went on and had a new spirometry, as my doctor requested, and I'm honestly scared by the results.
MVV was 50% in august and its 62% now. MIP and MEP values are very very low. I repeated the test twice, then stopped for a little rest, and then twice again. Doctor supervised my execution and said everything looked like it was being done correctly, but could not believe these results. (attached)
MIP is 34 (49%) - MEP 0 (0%)
I tried again on another machine, same. I was very dizzy at this point and I can say I tried my best. Those reported are my best results.
Pulmonologist said it's very likely a neuromuscular symptom, advised me to see a neurologist soon. I went numb.
Every symptom I have is consistent with ALS. I can't breathe fully and I'm always tired. I have cramping, very hoarse and strained voice. Sometimes excessive saliva when talking, and need to take pauses in between my speech. My voice has a nasal quality to it that people start to notice too. I have clinical weakness in both arms (but then again, I still have a cervical hernia), and an EMG that did not come back clean, a few months back. Muscles look flaccid (but hey I don't exercise) and I have a small dent in both shoulders (doctor saw it and said probably hernia).
I can swallow correctly (fluids and solid food), I don't choke, but I notice that I eat slower. Like it takes more time to finish that same sandwich. I wondered if I was maybe depressed or something, but honestly I am hungry, I just chew slowly.
I know with those MIP and MEP values it doesnt look good. I was just wondering if this might be something else. Ever since I lost my dad to ALS I have been obsessed and health-anxious, but I never fully believed it could be it, at least let's say I hoped it was stress and trauma and other causes, but my whole house of cards collapsed during this last visit. I am genuinely worried.
I can't express enough how glad I am to be able to post here and how much I appreciate your informative and educated feedback. Thank you for this forum that has been a confort and a source of information for me so far
I wanted to give an update on my situation, and ask for advice. Your honest opinion. So as I said I was scheduled for a neurological visit in september, but I got scared and canceled it, now it's rescheduled, and I have it in a few days. I know it's childish but I got really scared.
I don't know I thought I might just "shake it off" and not think about it anymore.
But I got weaker.
In the meantime I went on and had a new spirometry, as my doctor requested, and I'm honestly scared by the results.
MVV was 50% in august and its 62% now. MIP and MEP values are very very low. I repeated the test twice, then stopped for a little rest, and then twice again. Doctor supervised my execution and said everything looked like it was being done correctly, but could not believe these results. (attached)
MIP is 34 (49%) - MEP 0 (0%)
I tried again on another machine, same. I was very dizzy at this point and I can say I tried my best. Those reported are my best results.
Pulmonologist said it's very likely a neuromuscular symptom, advised me to see a neurologist soon. I went numb.
Every symptom I have is consistent with ALS. I can't breathe fully and I'm always tired. I have cramping, very hoarse and strained voice. Sometimes excessive saliva when talking, and need to take pauses in between my speech. My voice has a nasal quality to it that people start to notice too. I have clinical weakness in both arms (but then again, I still have a cervical hernia), and an EMG that did not come back clean, a few months back. Muscles look flaccid (but hey I don't exercise) and I have a small dent in both shoulders (doctor saw it and said probably hernia).
I can swallow correctly (fluids and solid food), I don't choke, but I notice that I eat slower. Like it takes more time to finish that same sandwich. I wondered if I was maybe depressed or something, but honestly I am hungry, I just chew slowly.
I know with those MIP and MEP values it doesnt look good. I was just wondering if this might be something else. Ever since I lost my dad to ALS I have been obsessed and health-anxious, but I never fully believed it could be it, at least let's say I hoped it was stress and trauma and other causes, but my whole house of cards collapsed during this last visit. I am genuinely worried.
I can't express enough how glad I am to be able to post here and how much I appreciate your informative and educated feedback. Thank you for this forum that has been a confort and a source of information for me so far