ashbee
New member
- Joined
- Jun 17, 2020
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
- City
- Jax
*I tried to upload video of bad tongue fasciculation, I couldn't.*
Hi, I'm 29.
I've had ongoing symptoms since last year. In June starting with ataxia and vertigo. In November I noticed some difficult swallowing. I'm February started having choking episodes. In April started having muscle problems with my my throat it would vibrate. Developed vocal chords dysfunction. In April the muscle weakness got worse.
The most bothersome is weak chest diaphragm muscles. I stop breathing with my CPAP for obstructive apnea I've used for years at night now. It's like my brain forget to tell my chest to move now.
I've been in bed dwindling for the past two months. Lost 30 pounds. Haven't been able to work, because the breathing and cognitive issues that came along with this. I have very bad memory, sometimes I can't recall words or my family members.
I have no insurance, so it seems I will get no help for whatever I have. The hospital has only been saying I have acid reflux and anxiety. And not taking me seriously. And they told me it wasn't possible to see a neurologist in the ER.
I'm afraid I'm going to succumb to respiratory failure from my chest giving out. I can't afford a bipap or asv machine.
Hi, I'm 29.
I've had ongoing symptoms since last year. In June starting with ataxia and vertigo. In November I noticed some difficult swallowing. I'm February started having choking episodes. In April started having muscle problems with my my throat it would vibrate. Developed vocal chords dysfunction. In April the muscle weakness got worse.
The most bothersome is weak chest diaphragm muscles. I stop breathing with my CPAP for obstructive apnea I've used for years at night now. It's like my brain forget to tell my chest to move now.
I've been in bed dwindling for the past two months. Lost 30 pounds. Haven't been able to work, because the breathing and cognitive issues that came along with this. I have very bad memory, sometimes I can't recall words or my family members.
I have no insurance, so it seems I will get no help for whatever I have. The hospital has only been saying I have acid reflux and anxiety. And not taking me seriously. And they told me it wasn't possible to see a neurologist in the ER.
I'm afraid I'm going to succumb to respiratory failure from my chest giving out. I can't afford a bipap or asv machine.