Al188
Member
- Joined
- Jul 23, 2018
- Messages
- 11
- Reason
- Learn about ALS
- Country
- Uni
- State
- NY
- City
- Springville
I have read the “Read Before Posting” section and must admit that I do not have clinical weakness. However, my symptoms are not typical of limb onset ALS, but rather respiratory onset (or perhaps thoracic?). Quick information about me, I am a 30-year-old male. I completely understand the statistical probabilities mentioned in the common questions post.
Two months ago, I experienced a rather sudden onset of body-wide twitches, starting in the calves that go 24/7, with the second most activity within the abdomen and rib area (these feel more like “pops” and flutters). I get twitches just about everyone else you can imagine but are quite sporadic. Along with the twitches, spasms, and muscle stiffness, I get fairly random cramping in the feet, hands, calves, and abdomen. The abdomen cramps have been the most violent, where they will actually clamp down. General coordination and clumsiness has been present since onset.
I saw a general neurologist one month after onset of twitches who did the typical clinical exam, stating I have no clinical weakness or apparent atrophy. She still ordered the EMG in the left arm/leg just to double check, which came back normal (CK blood test also normal). I was a bit unimpressed by the doctor who conducted the EMG, as the only thing she said to me was “everything looks normal” without any explanation or report. The general neurologist has also ordered an MRI but is scheduled for next week.
Since then, symptoms have progressed, which it is now about two months after onset of twitches. The most startling symptom of all is the shortness of breath. It worsened this past weekend, awaking me during the night, gasping for air. The best way to explain the sensation is my abdomen feels like it is squeezing down, not allowing me to take full breaths. This has persisted during the day, especially when walking around or doing household chores, but is much worse at night, waking me up every couple of hours. I’ve also been having mild headaches and dizziness, starting a couple weeks ago. Along with the shortness of breath, my energy levels have plummeted, making me need to lay down frequently throughout the day and frequent yawning. One thing I want to point out about the shortness of breath is, I have had lifelong asthma, and these are in no way shape or form similar to an asthma attack. I even tried my inhaler just to be sure, and it did nothing since my lungs are functioning normally. Also, I have noticed difficulty swallowing phlegm and needing to clear my throat frequently, as well as very bad dry mouth during the night (the dry mouth isn’t as bad during the day because I drink a lot of water). Lastly, I have noticed my eyes have begun jumping. No, I do not mean eyelid twitches (I don’t have those). It can occur at any time, but most often happens when reading. My eyes will literally jump from one position and then return to center.
Finally, I have perceived atrophy in my left thenar muscle as well as the muscle on the top of my right foot near the outer ankle bone (not sure what that’s called). Both of these areas also get frequent twitches, and as for the thenar muscle, some that make the fingers move. These muscles are certainly not completely gone but are much smaller than the opposite side.
Again, I realize these are not the typical limb onset ALS symptoms. If I were to have shortness of breath without all the twitches, cramping, and stiffness, I would absolutely not be thinking ALS. I also realize this is extremely rare, so even finding people who have experienced this or have known someone who experienced this will be difficult. I still thought it was worth reaching out, because I am trying to decide if I need to find a possible second opinion from a neurologist, or if I should seek a different type of doctor for the breathing issues. Thank you for any input you may be able to provide.
Two months ago, I experienced a rather sudden onset of body-wide twitches, starting in the calves that go 24/7, with the second most activity within the abdomen and rib area (these feel more like “pops” and flutters). I get twitches just about everyone else you can imagine but are quite sporadic. Along with the twitches, spasms, and muscle stiffness, I get fairly random cramping in the feet, hands, calves, and abdomen. The abdomen cramps have been the most violent, where they will actually clamp down. General coordination and clumsiness has been present since onset.
I saw a general neurologist one month after onset of twitches who did the typical clinical exam, stating I have no clinical weakness or apparent atrophy. She still ordered the EMG in the left arm/leg just to double check, which came back normal (CK blood test also normal). I was a bit unimpressed by the doctor who conducted the EMG, as the only thing she said to me was “everything looks normal” without any explanation or report. The general neurologist has also ordered an MRI but is scheduled for next week.
Since then, symptoms have progressed, which it is now about two months after onset of twitches. The most startling symptom of all is the shortness of breath. It worsened this past weekend, awaking me during the night, gasping for air. The best way to explain the sensation is my abdomen feels like it is squeezing down, not allowing me to take full breaths. This has persisted during the day, especially when walking around or doing household chores, but is much worse at night, waking me up every couple of hours. I’ve also been having mild headaches and dizziness, starting a couple weeks ago. Along with the shortness of breath, my energy levels have plummeted, making me need to lay down frequently throughout the day and frequent yawning. One thing I want to point out about the shortness of breath is, I have had lifelong asthma, and these are in no way shape or form similar to an asthma attack. I even tried my inhaler just to be sure, and it did nothing since my lungs are functioning normally. Also, I have noticed difficulty swallowing phlegm and needing to clear my throat frequently, as well as very bad dry mouth during the night (the dry mouth isn’t as bad during the day because I drink a lot of water). Lastly, I have noticed my eyes have begun jumping. No, I do not mean eyelid twitches (I don’t have those). It can occur at any time, but most often happens when reading. My eyes will literally jump from one position and then return to center.
Finally, I have perceived atrophy in my left thenar muscle as well as the muscle on the top of my right foot near the outer ankle bone (not sure what that’s called). Both of these areas also get frequent twitches, and as for the thenar muscle, some that make the fingers move. These muscles are certainly not completely gone but are much smaller than the opposite side.
Again, I realize these are not the typical limb onset ALS symptoms. If I were to have shortness of breath without all the twitches, cramping, and stiffness, I would absolutely not be thinking ALS. I also realize this is extremely rare, so even finding people who have experienced this or have known someone who experienced this will be difficult. I still thought it was worth reaching out, because I am trying to decide if I need to find a possible second opinion from a neurologist, or if I should seek a different type of doctor for the breathing issues. Thank you for any input you may be able to provide.