Fday
New member
- Joined
- Mar 20, 2024
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NC
- City
- WAXHAW
Hello all!
I have been having a very difficult time the last 2 weeks with a bizarre set of symptoms that have been increasingly concerning and led to panic attacks. Any insight would be greatly appreciated!
I first began feeling painless muscle twitching 9 months ago. It started in one leg and now just I feel twitches literally everywhere - legs, feet, hands, back, sometimes even my abdomen. I I attributed it to excessive caffeine and the physical type of work that I do. It never bothered me and never kept me awake. I have not had any instances of weakness or atrophy that I’m aware of to date.
However, 2 weeks ago I suddenly started having pins and needles sensation in my hands and feet that progressed into my legs feeling swollen, but not looking swollen. Twitching greatly increased at night. I also started having jerks in my legs, feet, hands and shoulders that I’d never had before - these jerks only happen while trying to fall asleep.
Other symptoms appeared from there, during waking hours. For a few days, my head felt difficult to hold up and my eyes felt like they were drifting to one side. I had a tingly feeling up my neck and then a momentary feeling of numbness in my chin. i thought it might be sleep deprivation and anxiety, and indeed all of these symptoms have cleared up and I’m no longer feeling them.
That being said, nighttime twitching and jerking has severely increased to the point that it takes many hours for my body to relax and fall to sleep, and then I only sleep 4-5 hours. I have always been a 9 hour sleeper and have never had trouble sleeping. I have begin to have more bizarre sensations while sleeping such as twitching lips, and sometimes it’s a twitch that causes one side of my moth to momentarily go down, chin and forehead “scrunching” (involuntary), and the most disturbing nighttime occurrence has been involuntarily swallowing - as I’m drifting off to sleep, suddenly my body wakes up making a deep swallow.
And this is what has me afraid. I understand that without muscle weakness or atrophy there cannot be ALS. But I also understand that sometimes ALS presents with bulbar symptoms. I have been experiencing difficulty swallowing, lump in the throat feeling, and requiring effort to get food down for about 5 days now. I also feel the food just staying in the back of my throat and feeling like it wants to come back up. I’m aware of globus sensation and GERD, but to my knowledge neither of these affects the actual ability to swallow or cause difficulty in swallowing.
So (and thank you for reading this far!) could this swallowing issue be a presenting ALS symptom? I have recently gone to urgent care, a PCP, and ER in relation to these symptoms. Cat scan and MRI were clear, blood tests, urine tests and initial clinical exams by the drs showed nothing of concern. I spoke with a neurologist via video chat and he was unconcerned after testing my limb function, but as it was not an in person visit, he did not conduct any tests of my bulbar region or do any actual machine testing. I have an in person appt scheduled in 2 months, but I am living with extreme anxiety and fear having to wait nearly 2 months to be seen.
Could this swallowing issue point to ALS?
*As a side note, I also have carpals tunnel in my left arm and a cramping sensation only in my left ring finger. I only bring this up because I read that a woman was misdiagnosed with carpal tunnel before being diagnosed with ALS, and wasn’t sure if this was significant or not.
Thank you all very much for reading and for offering any insight!
I have been having a very difficult time the last 2 weeks with a bizarre set of symptoms that have been increasingly concerning and led to panic attacks. Any insight would be greatly appreciated!
I first began feeling painless muscle twitching 9 months ago. It started in one leg and now just I feel twitches literally everywhere - legs, feet, hands, back, sometimes even my abdomen. I I attributed it to excessive caffeine and the physical type of work that I do. It never bothered me and never kept me awake. I have not had any instances of weakness or atrophy that I’m aware of to date.
However, 2 weeks ago I suddenly started having pins and needles sensation in my hands and feet that progressed into my legs feeling swollen, but not looking swollen. Twitching greatly increased at night. I also started having jerks in my legs, feet, hands and shoulders that I’d never had before - these jerks only happen while trying to fall asleep.
Other symptoms appeared from there, during waking hours. For a few days, my head felt difficult to hold up and my eyes felt like they were drifting to one side. I had a tingly feeling up my neck and then a momentary feeling of numbness in my chin. i thought it might be sleep deprivation and anxiety, and indeed all of these symptoms have cleared up and I’m no longer feeling them.
That being said, nighttime twitching and jerking has severely increased to the point that it takes many hours for my body to relax and fall to sleep, and then I only sleep 4-5 hours. I have always been a 9 hour sleeper and have never had trouble sleeping. I have begin to have more bizarre sensations while sleeping such as twitching lips, and sometimes it’s a twitch that causes one side of my moth to momentarily go down, chin and forehead “scrunching” (involuntary), and the most disturbing nighttime occurrence has been involuntarily swallowing - as I’m drifting off to sleep, suddenly my body wakes up making a deep swallow.
And this is what has me afraid. I understand that without muscle weakness or atrophy there cannot be ALS. But I also understand that sometimes ALS presents with bulbar symptoms. I have been experiencing difficulty swallowing, lump in the throat feeling, and requiring effort to get food down for about 5 days now. I also feel the food just staying in the back of my throat and feeling like it wants to come back up. I’m aware of globus sensation and GERD, but to my knowledge neither of these affects the actual ability to swallow or cause difficulty in swallowing.
So (and thank you for reading this far!) could this swallowing issue be a presenting ALS symptom? I have recently gone to urgent care, a PCP, and ER in relation to these symptoms. Cat scan and MRI were clear, blood tests, urine tests and initial clinical exams by the drs showed nothing of concern. I spoke with a neurologist via video chat and he was unconcerned after testing my limb function, but as it was not an in person visit, he did not conduct any tests of my bulbar region or do any actual machine testing. I have an in person appt scheduled in 2 months, but I am living with extreme anxiety and fear having to wait nearly 2 months to be seen.
Could this swallowing issue point to ALS?
*As a side note, I also have carpals tunnel in my left arm and a cramping sensation only in my left ring finger. I only bring this up because I read that a woman was misdiagnosed with carpal tunnel before being diagnosed with ALS, and wasn’t sure if this was significant or not.
Thank you all very much for reading and for offering any insight!
