TURNEJ10
New member
- Joined
- Aug 8, 2020
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- GA
- City
- Atlanta
I am a 37 year old fit male with a 2.5 year symptom history.
- May 2020: shortness of breath with reduced endurance, felt as if I had bricks on my chest when standing in swimming pool.
- Symptoms progress gradually, widespread twitching, worsened shortness of breath, especially when lying down.
- Bilateral full body subjective weakness, muscle tenderness, very gradual loss of bulk, none of the doctors claim to see even though I’ve taken measurements. (Neck is weakening and has shrunk from 15.5” to 14”) **Not body fat as I am very lean)
- Mild cognitive abnormalities, like aphasia. ie not recalling or saying correct words with long pauses in between.
- Normal brain and cervical spine MRIs.
- PFT normal except MIP 86%Pred, MEP 43% (as of 2 years ago)
- 3 normal EMGs
- 1 mild abnormal SFEMG.
- MG ruled out- negative blood test for AChR and MuSK antibodies. I even did a trial of pyridostigmine in case I might have sero negative MG.
- Normal genetic testing, normal blood tests, normal CK.
I have read that SFEMGs will be abnormal due to its high sensitivity before a standard EMG can detect abnormalities in ALS.
I have also read that younger people typically progress much slower and I think I might fall into that category (I was 35 at symptom onset).
Any insight from anyone who has experienced something similar would be appreciated. Thank you.
- May 2020: shortness of breath with reduced endurance, felt as if I had bricks on my chest when standing in swimming pool.
- Symptoms progress gradually, widespread twitching, worsened shortness of breath, especially when lying down.
- Bilateral full body subjective weakness, muscle tenderness, very gradual loss of bulk, none of the doctors claim to see even though I’ve taken measurements. (Neck is weakening and has shrunk from 15.5” to 14”) **Not body fat as I am very lean)
- Mild cognitive abnormalities, like aphasia. ie not recalling or saying correct words with long pauses in between.
- Normal brain and cervical spine MRIs.
- PFT normal except MIP 86%Pred, MEP 43% (as of 2 years ago)
- 3 normal EMGs
- 1 mild abnormal SFEMG.
- MG ruled out- negative blood test for AChR and MuSK antibodies. I even did a trial of pyridostigmine in case I might have sero negative MG.
- Normal genetic testing, normal blood tests, normal CK.
I have read that SFEMGs will be abnormal due to its high sensitivity before a standard EMG can detect abnormalities in ALS.
I have also read that younger people typically progress much slower and I think I might fall into that category (I was 35 at symptom onset).
Any insight from anyone who has experienced something similar would be appreciated. Thank you.