Frida95
New member
- Joined
- Nov 20, 2020
- Messages
- 2
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- SE
- State
- SE
- City
- Lund
Hi. I've never posted in an ALS forum before,. I am 25, and I know it's an unlikely diagnosis at my age. I'd very much like some thoughts about my situation, though.
For >1 year I've been having progressive difficulties breathing, which I naturally attributed to stress or perhaps asthma. In june, I finally visited a GP since I couldn't get through a stationary work day due to constant gasping for air, and increasingly aggressive neck twitches. It's like I need to actively use all my muscles to get air in, and I have developed tiredness and soreness in the accessory breathing muscles due to this.
Also, during the last half year I've had progressive worsening of facial twitching and weakness - the last month, I can't in any setting smile without my cheeks aggressively twitching and forcing me to let the smile go. Very socially awkward, but I put this down to stress too. I've also had trouble yawning, and feeling of having to swallow multiple times when getting food down. I asked my GP for anxiety pills (benzo) to see if my symptoms would decrease, but no effect at all.
In september, I had a spirometry showing mild restriction and low air flow. FVC = 76%, FEV1 =77%. PEF = 350. I had a HRCT of the chest, showing no lung disease. I was perplexed by this, and as a med student I knew that neuromuscular disease is a cause for restrictive lung function in absence of lung disease. This is when I started to worry for real.
My GP ordered an EMG (not specifically looking for ALS, I think), which examined 7 muscles in right arm and right leg. I've had some twitching in them, so I thought that if they were clear, ALS should be outruled. EMG came back fine, and I was relieved, but as face twitching and weakness increased, I am now very worried I have bulbar and respiratory engagement that didn't show in the leg/arm EMG. I am still very perplexed about the unexplained PFT restriction.
Am I being a ruthless hypochondriac? I would really appreciate any input, wether reassuring or advisory. I hope this is not a disrespectful post, and I would never post unless I had at least this one pathological finding (the restriction at PFT)
For >1 year I've been having progressive difficulties breathing, which I naturally attributed to stress or perhaps asthma. In june, I finally visited a GP since I couldn't get through a stationary work day due to constant gasping for air, and increasingly aggressive neck twitches. It's like I need to actively use all my muscles to get air in, and I have developed tiredness and soreness in the accessory breathing muscles due to this.
Also, during the last half year I've had progressive worsening of facial twitching and weakness - the last month, I can't in any setting smile without my cheeks aggressively twitching and forcing me to let the smile go. Very socially awkward, but I put this down to stress too. I've also had trouble yawning, and feeling of having to swallow multiple times when getting food down. I asked my GP for anxiety pills (benzo) to see if my symptoms would decrease, but no effect at all.
In september, I had a spirometry showing mild restriction and low air flow. FVC = 76%, FEV1 =77%. PEF = 350. I had a HRCT of the chest, showing no lung disease. I was perplexed by this, and as a med student I knew that neuromuscular disease is a cause for restrictive lung function in absence of lung disease. This is when I started to worry for real.
My GP ordered an EMG (not specifically looking for ALS, I think), which examined 7 muscles in right arm and right leg. I've had some twitching in them, so I thought that if they were clear, ALS should be outruled. EMG came back fine, and I was relieved, but as face twitching and weakness increased, I am now very worried I have bulbar and respiratory engagement that didn't show in the leg/arm EMG. I am still very perplexed about the unexplained PFT restriction.
Am I being a ruthless hypochondriac? I would really appreciate any input, wether reassuring or advisory. I hope this is not a disrespectful post, and I would never post unless I had at least this one pathological finding (the restriction at PFT)