robgib6
New member
- Joined
- Jul 2, 2019
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- New York
Hi All - I am a 31y/o male currently having many symptoms and going through the testing process. Hoping people here can shed some light on my condition.
First symptoms started in mid-April with slight morning headaches which went away after a few hours. Opthamologist confirmed my eyes are totally normal. I also started waking up every few hours, unable to sleep throughout the night and issues laying flat. In early May, both legs (calfs/thighs) became painful after minimal exertion and fatigue easily, however no clinical weakness. In June, this began occurring in my shoulders and arms, also painful and fatigued. I also have bad neck and back pain along with some shortness of breath all of which have continued.
Tests so far:
- All bloodwork (celiac, Lyme, autoimmune diseases, vitamins) are normal; CK 79
- Chest xray and PFT (sitting only) were normal
- No weakness detected on clinical exams, however noted brisk (3+) reflex at the knees and 2 beats of clonus on left ankle - deemed not notable by Dr
- Full spine and brain MRI normal so MS ruled out
- SSEP (Sensory evoked potentials) - Tibial SSEP abnormal on left and right, other SSEP normal
- NCV showed carpal tunnel though I have no symptoms of this and slow NCV velocity on both calves and ulnar sensory tests
- EMG only of legs and hand was normal - Dr would not test spinal/bulbar/upper arms given this was normal
Only dx thus far is that it may be postviral syndrome, though requested EMG/NCV redone in 3months as he could not rule it out. Does this sound potentially like ALS onset? Aware of the odds given my age and most on here saying it is about failing, though many members note pain/fatigue early on. Between the morning headaches (blood CO2 was 31 and elevated), muscle pain/fatigue, and some abnormal NCV/SSEP tests, I am very concerned. All of this came on within 10 weeks including respiratory issues; I have also read that incorrect carpal tunnel dx and tibial SSEP issues have been seen in early ALS.
Any advice or insight would be greatly appreciated, I very much value your opinion and will also look to donate here. Thank you.
First symptoms started in mid-April with slight morning headaches which went away after a few hours. Opthamologist confirmed my eyes are totally normal. I also started waking up every few hours, unable to sleep throughout the night and issues laying flat. In early May, both legs (calfs/thighs) became painful after minimal exertion and fatigue easily, however no clinical weakness. In June, this began occurring in my shoulders and arms, also painful and fatigued. I also have bad neck and back pain along with some shortness of breath all of which have continued.
Tests so far:
- All bloodwork (celiac, Lyme, autoimmune diseases, vitamins) are normal; CK 79
- Chest xray and PFT (sitting only) were normal
- No weakness detected on clinical exams, however noted brisk (3+) reflex at the knees and 2 beats of clonus on left ankle - deemed not notable by Dr
- Full spine and brain MRI normal so MS ruled out
- SSEP (Sensory evoked potentials) - Tibial SSEP abnormal on left and right, other SSEP normal
- NCV showed carpal tunnel though I have no symptoms of this and slow NCV velocity on both calves and ulnar sensory tests
- EMG only of legs and hand was normal - Dr would not test spinal/bulbar/upper arms given this was normal
Only dx thus far is that it may be postviral syndrome, though requested EMG/NCV redone in 3months as he could not rule it out. Does this sound potentially like ALS onset? Aware of the odds given my age and most on here saying it is about failing, though many members note pain/fatigue early on. Between the morning headaches (blood CO2 was 31 and elevated), muscle pain/fatigue, and some abnormal NCV/SSEP tests, I am very concerned. All of this came on within 10 weeks including respiratory issues; I have also read that incorrect carpal tunnel dx and tibial SSEP issues have been seen in early ALS.
Any advice or insight would be greatly appreciated, I very much value your opinion and will also look to donate here. Thank you.
