HPXB
New member
- Joined
- Jul 12, 2021
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Greetings,
Thank you so much for your valuable time and energy. Out of great respect for this community, I will try to keep my summary and inquiry as concise as I am able.
Symptom history: 34-year-old male. 4 months ago, I began experiencing fasciculations in my left thumb when pinching or gripping something tightly. These fasciculations would pull my entire thumb downward repeatedly for 10 or so seconds each time. Since then, I have developed visible fasciculations in both forearms, biceps, calf muscles, quad muscles, face, and hands (thumbs and hypothenar muscles). Fasciculations occur daily, though they are intermittent and relatively brief. When they are at their worst, they happen every few minutes. In addition to observing them, I can feel them when they occur. Perhaps unsurprisingly, the feeling is a combination of tickling and contraction/tightness. No clinical weakness noted, though there are things I often cannot do (e.g., tying shoes tightly using thumb) without triggering the brief fasciculations. No wasting noted by me or providers.
While I was originally referred to an orthopedist, he refused to even examine me after seeing a video of the thumb fasciculation occurring, insisting I meet with a neurologist. This orthopedist, without any prompting, mentioned ALS as a diagnostic possibility, which obviously sparked the concern of myself, my wife, and my PCP. It even led my wife and I to pause our plan to expand our family, as the future was suddenly brought into question. I pursued relevant testing ASAP.
Test results: Bloodwork was clean, clinical/physical exam (e.g., strength/reflexes) completed by PCP was clean, neurological exam (completed by neurologist via telehealth) was clean. Most importantly, EMG of both thumbs (thenar muscle), biceps, and neck done 2 weeks ago was normal.
I was originally under the impression that a clean EMG and clean clinical exam meant no diagnosis. However, I keep reading stories about exceptions to these rules, with some individuals reporting fasciculations without weakness as their initial symptom of ALS, and others (usually with early fasciculations) who received clean EMGs and clinical exams prior to eventually receiving an ALS diagnosis down the line. As I continue to experience more frequent and pervasive fasciculations, with no symptom improvement over 4 months, I ask - can I still go ahead and conclude that it is not ALS? Contrarily, should I continue to monitor my symptoms or even schedule subsequent tests?
Thank you again for your compassion and guidance. I tremendously appreciate it and will try not to waste this community's time with any more reassurance seeking.
H
Thank you so much for your valuable time and energy. Out of great respect for this community, I will try to keep my summary and inquiry as concise as I am able.
Symptom history: 34-year-old male. 4 months ago, I began experiencing fasciculations in my left thumb when pinching or gripping something tightly. These fasciculations would pull my entire thumb downward repeatedly for 10 or so seconds each time. Since then, I have developed visible fasciculations in both forearms, biceps, calf muscles, quad muscles, face, and hands (thumbs and hypothenar muscles). Fasciculations occur daily, though they are intermittent and relatively brief. When they are at their worst, they happen every few minutes. In addition to observing them, I can feel them when they occur. Perhaps unsurprisingly, the feeling is a combination of tickling and contraction/tightness. No clinical weakness noted, though there are things I often cannot do (e.g., tying shoes tightly using thumb) without triggering the brief fasciculations. No wasting noted by me or providers.
While I was originally referred to an orthopedist, he refused to even examine me after seeing a video of the thumb fasciculation occurring, insisting I meet with a neurologist. This orthopedist, without any prompting, mentioned ALS as a diagnostic possibility, which obviously sparked the concern of myself, my wife, and my PCP. It even led my wife and I to pause our plan to expand our family, as the future was suddenly brought into question. I pursued relevant testing ASAP.
Test results: Bloodwork was clean, clinical/physical exam (e.g., strength/reflexes) completed by PCP was clean, neurological exam (completed by neurologist via telehealth) was clean. Most importantly, EMG of both thumbs (thenar muscle), biceps, and neck done 2 weeks ago was normal.
I was originally under the impression that a clean EMG and clean clinical exam meant no diagnosis. However, I keep reading stories about exceptions to these rules, with some individuals reporting fasciculations without weakness as their initial symptom of ALS, and others (usually with early fasciculations) who received clean EMGs and clinical exams prior to eventually receiving an ALS diagnosis down the line. As I continue to experience more frequent and pervasive fasciculations, with no symptom improvement over 4 months, I ask - can I still go ahead and conclude that it is not ALS? Contrarily, should I continue to monitor my symptoms or even schedule subsequent tests?
Thank you again for your compassion and guidance. I tremendously appreciate it and will try not to waste this community's time with any more reassurance seeking.
H
