Chester787
New member
- Joined
- Jul 22, 2022
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- AU
- State
- NS
- City
- Melbourne
Hi everyone, would appreciate your kind advice.
I’ve had 16 months of fasciculations that started solely in my left foot, spreading into both lower legs. Sporadic twitches elsewhere in body but primarily legs and one hand. In my legs/feet they are visible and constant. I don’t go ten seconds without feet/calf fasciculations.
Then 8 months ago I started getting a dull aching in one arm just above the elbow. It’s not in one spot, just vaguely around the area. I also cannot lift my arms up for long. E.g hanging washing out - I can peg a couple of items then bring my arms down to rest, then can do another item etc. My arms just feel tired so soon. Same thing for using knife/fork etc. This has definitely gotten worse over the last 8 months, but I do have full movement.
I have seen two neurologists and have had three EMGs over the last 18 months. They have shown fasciculations but nothing else.
Clinically, I have hyperreflexia.
Head and full spine MRI was clear, lumbar puncture was clear.
The neuros both say ‘watch and wait’ and are unclear what is happening. They say ‘your EMG is not suggestive of ALS’ which is obviously positive news but with the scary spreading fasciculations and worsening arm “weakness”, I’m wondering how long is safe enough to assume that I’m not watching and waiting for ALS?
Also, is the gradual “weakening” of the arms a common progression for ALS before actual failure?
I have read the helpful info on this forum, but also read info to the contrary elsewhere.
Thankyou for your advice.
I’ve had 16 months of fasciculations that started solely in my left foot, spreading into both lower legs. Sporadic twitches elsewhere in body but primarily legs and one hand. In my legs/feet they are visible and constant. I don’t go ten seconds without feet/calf fasciculations.
Then 8 months ago I started getting a dull aching in one arm just above the elbow. It’s not in one spot, just vaguely around the area. I also cannot lift my arms up for long. E.g hanging washing out - I can peg a couple of items then bring my arms down to rest, then can do another item etc. My arms just feel tired so soon. Same thing for using knife/fork etc. This has definitely gotten worse over the last 8 months, but I do have full movement.
I have seen two neurologists and have had three EMGs over the last 18 months. They have shown fasciculations but nothing else.
Clinically, I have hyperreflexia.
Head and full spine MRI was clear, lumbar puncture was clear.
The neuros both say ‘watch and wait’ and are unclear what is happening. They say ‘your EMG is not suggestive of ALS’ which is obviously positive news but with the scary spreading fasciculations and worsening arm “weakness”, I’m wondering how long is safe enough to assume that I’m not watching and waiting for ALS?
Also, is the gradual “weakening” of the arms a common progression for ALS before actual failure?
I have read the helpful info on this forum, but also read info to the contrary elsewhere.
Thankyou for your advice.