- Joined
- Oct 20, 2019
- Messages
- 218
- Reason
- PALS
- Diagnosis
- 01/2020
- Country
- US
- State
- CA
- City
- Los Angeles
Hello folks,
I am a 49-year old male in Southern California, living with the fear that I have ALS. I know this is a familiar trope, because I have spent many months reading posts on this support forum. This is the first time I am posting. Let me say first that I'm so impressed with the level of care and support that this community has given to others living with and dealing with this disease. I'm sure it's all you can do to get through the day, yet you are giving your time to others. It's awe inspiring.
I am posting now because I hope to solicit useful information, and also I suppose for moral support. My situation - 17 months ago, I started twitching all over, though mostly concentrated in my right arm. Also, my hands had a definite tremor. Doctor referred me to neuro, who ordered MRIs on brain and cervical spine, as well as EMG/nerve conduction. Brain MRI was normal, and cervical spine showed some curious stuff (disc protrusions, stenosis, etc..), but nothing unusual for someone my age. EMG was the scary one - I would probably characterize it wrong, so lets just say it wasn't "clean" - the view of the doctor who conducted it was that I most likely had ulnar neuropathy and some right and left radiculopathy, though he said in the report that given the widespread fasciculations plus hand weakness, he couldn't eliminate the possibility that it was the beginning of something that could "evolve into" MND, and therefore I might have to repeat the test. Of course, that last part is what prevented me from sleeping for the next two weeks. Then I went back to the neuro, who said this was more good news than bad, and that I should continue living my life and not worry (OK. . . .). He also did the clinical tests on me which checked out fine. That whole serious of events took place over the course of May, 2018. From there, I actually did put it in the back of my mind and continued with normal life for the next year and a half (with occasional return visits to the neuro, who repeated the clinical tests - all fine)
Fast forward 17 months later, to now. For the last 17 months, although my fasciculations have remained, very little progressed ALS-wise. I've spent way more time on the Internet than I should, so I know all the signs and symptoms. I know it's about failing, not feeling, etc.. And I have felt stable. No failing. A few small things - Wartenberg's sign once in a while (pinky wont stay with other fingers), but nothing affecting my functioning. As the months ticked away, I felt more confident that the ALS worry was in the rear-view. Then a couple of weeks ago, a few small things started happening - right thumb can't do everything that left thumb can. Writing feels strained because of weak pinky and ring finger. Stuff like that. Some irregular soreness in right arm after a workout. So now I'm back into panic and anxiety mode. Can't sleep. Feel like I'm dying and will leave wife and kids behind. So my question for the community - did anyone else have a plateau that long? Any thoughts? I have booked a new neuro appt and a new EMG which will tell the tale I'm sure, but thought I would inquire. Thank you for taking the time to read this.
I am a 49-year old male in Southern California, living with the fear that I have ALS. I know this is a familiar trope, because I have spent many months reading posts on this support forum. This is the first time I am posting. Let me say first that I'm so impressed with the level of care and support that this community has given to others living with and dealing with this disease. I'm sure it's all you can do to get through the day, yet you are giving your time to others. It's awe inspiring.
I am posting now because I hope to solicit useful information, and also I suppose for moral support. My situation - 17 months ago, I started twitching all over, though mostly concentrated in my right arm. Also, my hands had a definite tremor. Doctor referred me to neuro, who ordered MRIs on brain and cervical spine, as well as EMG/nerve conduction. Brain MRI was normal, and cervical spine showed some curious stuff (disc protrusions, stenosis, etc..), but nothing unusual for someone my age. EMG was the scary one - I would probably characterize it wrong, so lets just say it wasn't "clean" - the view of the doctor who conducted it was that I most likely had ulnar neuropathy and some right and left radiculopathy, though he said in the report that given the widespread fasciculations plus hand weakness, he couldn't eliminate the possibility that it was the beginning of something that could "evolve into" MND, and therefore I might have to repeat the test. Of course, that last part is what prevented me from sleeping for the next two weeks. Then I went back to the neuro, who said this was more good news than bad, and that I should continue living my life and not worry (OK. . . .). He also did the clinical tests on me which checked out fine. That whole serious of events took place over the course of May, 2018. From there, I actually did put it in the back of my mind and continued with normal life for the next year and a half (with occasional return visits to the neuro, who repeated the clinical tests - all fine)
Fast forward 17 months later, to now. For the last 17 months, although my fasciculations have remained, very little progressed ALS-wise. I've spent way more time on the Internet than I should, so I know all the signs and symptoms. I know it's about failing, not feeling, etc.. And I have felt stable. No failing. A few small things - Wartenberg's sign once in a while (pinky wont stay with other fingers), but nothing affecting my functioning. As the months ticked away, I felt more confident that the ALS worry was in the rear-view. Then a couple of weeks ago, a few small things started happening - right thumb can't do everything that left thumb can. Writing feels strained because of weak pinky and ring finger. Stuff like that. Some irregular soreness in right arm after a workout. So now I'm back into panic and anxiety mode. Can't sleep. Feel like I'm dying and will leave wife and kids behind. So my question for the community - did anyone else have a plateau that long? Any thoughts? I have booked a new neuro appt and a new EMG which will tell the tale I'm sure, but thought I would inquire. Thank you for taking the time to read this.