mikep123
New member
- Joined
- Jan 25, 2019
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- Illinois
- City
- Chicago
Hello all and thank you in advance.
My name is Mike. I'm 25 years old, turning 26 next month. Surprisingly, in the face of what I wholeheartedly believe is an onset of ALS, I'm doing an okay job of trying to stay calm, but still very worried.
I've always had an odd anatomy. God gave me a bit of a wonky body, slightly lopsided (think Sylvester Stallone), and with a few larger than normal, albiet soft and moveable, lymphnodes that protrude on both sides of my neck - which were, in a previous spat of hypochondria several years ago, a major source of concern for me. Could this suggest an "abnormal immune system" which I read can be linked to ALS?
About 5 years ago is when I first started getting the constant twitching, or what I called "glitches and blips" (before I had heard of the term fasciculations). Until recently, these would occur infrequently and randomly all throughout my body with no ostensible patterns or localizations. I'm talking in my calf one second, in my shoulder the next, in my tongue, on my scalp, my eye lid, my arms, my hands, my thigh, even my scrotum. Sometimes they are small and only felt by me, other times they are much bigger and clearly visible to myself and other people. (Points away from ALS, I know. Please keep reading)
It was years ago when I first began noticing the twitchings that I, naturally, referred to Dr. Google. It was at this time where I was first introduced to the terms of MS, ALS, BFS, etc. Naturally I feared the worst (MS or ALS) and went straight to my family doctor who assured me that I was far too young and healthy to be worried about these things, and that it was "all in my head". He chalked it up to my anxiety getting the best of me and tapped me on the bum as he sent me out the door. So I went on living my hedonistic youth years carefree, trained to ignore the twitches and pains as they were probably something benign like BFS and/or Fibromyalgia.
Point being that I've been prone to twitches/fasciculations for some years now, and it's never really been a problem until very recently where as of the last 10-14 days or so, I'm beginning to really worry. I started a new job (which I adore) on the 8th of January, and on the morning of the first day of my second week, I woke up with this terribly odd feeling in my left shoulder, almost like it was really tight and weak at the same time, something I have never ever felt anything like before, which was especially alarming because that precise part of that shoulder was one of the more regular sites for these fasciculations that I had made note of. I thought I might have just slept on it weird and just tried my best to ignore it, but over the next 5 or so days, the feeling never went away. And when it did, it was replaced by what I would describe as a swollen tightness in left shoulder, my left tricep, left bicep, and some of my left pectoral (all connected of course). Again I ignored it and chalked it up to maybe my "Fibromyalgia" or that I slept in a weird position.
Here I am about 1.5-2 weeks later from that morning when I first woke up with the odd shoulder, and while the tightness/swelling has completely gone away, the whole area is significantly weak. I went to the gym to confirm this, and I am far weaker than normal on my left side as compared to my right, which have always been quite symmetrical in brute strength. While I do still have good strength in both my hands (slightly stronger grip in my right hand, which has always been my dominant) I'm also noticing that my tongue is feeling more and more slowed down and more and more is unable to keep up with my mouth, and my breathing is feeling strained. Also, if it's worth mentioning, my facials muscles (namely my left cheek and left eye brow) are feeling incredibly coordinated and hyperreflexive, much more so than they've ever been. In addition to all of this, my twitching has been going especially crazy all over, but localized on my right thigh suddenly. All day long I twitch. I assure you this is not imagined. People can see and have commented.
Other notables: I've lost seven pounds since starting the new job less than a month ago, my neck feels thinner than usual, my jaws are clicking as though the tendons/muscles that buffer the joints are atrophying, and I've noticed that my voice sounds deeper suddenly. Also, and this one freaks me out, I CANNOT FULLY YAWN OR SNEEZE. This was never ever an issue until very recently, and it's been unrelenting for over a week now. Could this be a sign of weakening muscles somewhere in my bulbar apparatus? In general, from everything that I've described, is it possible for ALS to onset in this nature?
I also want to add that about 6 month ago I went to my family doctor to complain about some problems going on "down stairs", namely weaker erections and loss of sensation/pleasure, which has since only gotten worse. To this same tune, for years I've trained myself to subconsciously do kegel exercising to strengthen my pelvic floor, but suddenly the last couple weeks, with all of this other stuff happening too, my ability to flex my pelvic floor has completely disappeared. Literally like it is disconnected from my brain. Seriously worries me. Though I read that ALS does not typically affect that area...Any insights?
I'm scheduled with a great Neuro at Tufts Medical Center in March, but not only is that a ways out, I'm afraid of what they're going to tell me.
One last thing I feel inclined to add, though I'm not sure of it's relevance, is that I foolish did 4 weeks of an anabolic androgenic steroid back in high school (17 years old). I told my family doctor about it shortly after when I was experiencing some typical side effects like ED, teste pain, etc. and he assured me that while it was stupid of me, one short dose such as the one I did could not have done any long term damage. I want to believe him, but I've always had this bad feeling in the back of my mind that one day I would be diagnosed with something awful and it would be because of that stupid month of gear that I ran back in high school to put on a few pounds before my junior year. I googled AAS + ALS and there was one Italian study I found that suggested there may be a link between the two.
Maybe I'm reading to much into these things, but can anyone on here help put my mind at ease?
God bless
Mikep123
PS - I donated $20 to ALS research during the ice bucket challenge back in 2014. I was a Junior in College. I know it's next to nothing. I wish it could have been more but I was barely able to afford noodles.
My name is Mike. I'm 25 years old, turning 26 next month. Surprisingly, in the face of what I wholeheartedly believe is an onset of ALS, I'm doing an okay job of trying to stay calm, but still very worried.
I've always had an odd anatomy. God gave me a bit of a wonky body, slightly lopsided (think Sylvester Stallone), and with a few larger than normal, albiet soft and moveable, lymphnodes that protrude on both sides of my neck - which were, in a previous spat of hypochondria several years ago, a major source of concern for me. Could this suggest an "abnormal immune system" which I read can be linked to ALS?
About 5 years ago is when I first started getting the constant twitching, or what I called "glitches and blips" (before I had heard of the term fasciculations). Until recently, these would occur infrequently and randomly all throughout my body with no ostensible patterns or localizations. I'm talking in my calf one second, in my shoulder the next, in my tongue, on my scalp, my eye lid, my arms, my hands, my thigh, even my scrotum. Sometimes they are small and only felt by me, other times they are much bigger and clearly visible to myself and other people. (Points away from ALS, I know. Please keep reading)
It was years ago when I first began noticing the twitchings that I, naturally, referred to Dr. Google. It was at this time where I was first introduced to the terms of MS, ALS, BFS, etc. Naturally I feared the worst (MS or ALS) and went straight to my family doctor who assured me that I was far too young and healthy to be worried about these things, and that it was "all in my head". He chalked it up to my anxiety getting the best of me and tapped me on the bum as he sent me out the door. So I went on living my hedonistic youth years carefree, trained to ignore the twitches and pains as they were probably something benign like BFS and/or Fibromyalgia.
Point being that I've been prone to twitches/fasciculations for some years now, and it's never really been a problem until very recently where as of the last 10-14 days or so, I'm beginning to really worry. I started a new job (which I adore) on the 8th of January, and on the morning of the first day of my second week, I woke up with this terribly odd feeling in my left shoulder, almost like it was really tight and weak at the same time, something I have never ever felt anything like before, which was especially alarming because that precise part of that shoulder was one of the more regular sites for these fasciculations that I had made note of. I thought I might have just slept on it weird and just tried my best to ignore it, but over the next 5 or so days, the feeling never went away. And when it did, it was replaced by what I would describe as a swollen tightness in left shoulder, my left tricep, left bicep, and some of my left pectoral (all connected of course). Again I ignored it and chalked it up to maybe my "Fibromyalgia" or that I slept in a weird position.
Here I am about 1.5-2 weeks later from that morning when I first woke up with the odd shoulder, and while the tightness/swelling has completely gone away, the whole area is significantly weak. I went to the gym to confirm this, and I am far weaker than normal on my left side as compared to my right, which have always been quite symmetrical in brute strength. While I do still have good strength in both my hands (slightly stronger grip in my right hand, which has always been my dominant) I'm also noticing that my tongue is feeling more and more slowed down and more and more is unable to keep up with my mouth, and my breathing is feeling strained. Also, if it's worth mentioning, my facials muscles (namely my left cheek and left eye brow) are feeling incredibly coordinated and hyperreflexive, much more so than they've ever been. In addition to all of this, my twitching has been going especially crazy all over, but localized on my right thigh suddenly. All day long I twitch. I assure you this is not imagined. People can see and have commented.
Other notables: I've lost seven pounds since starting the new job less than a month ago, my neck feels thinner than usual, my jaws are clicking as though the tendons/muscles that buffer the joints are atrophying, and I've noticed that my voice sounds deeper suddenly. Also, and this one freaks me out, I CANNOT FULLY YAWN OR SNEEZE. This was never ever an issue until very recently, and it's been unrelenting for over a week now. Could this be a sign of weakening muscles somewhere in my bulbar apparatus? In general, from everything that I've described, is it possible for ALS to onset in this nature?
I also want to add that about 6 month ago I went to my family doctor to complain about some problems going on "down stairs", namely weaker erections and loss of sensation/pleasure, which has since only gotten worse. To this same tune, for years I've trained myself to subconsciously do kegel exercising to strengthen my pelvic floor, but suddenly the last couple weeks, with all of this other stuff happening too, my ability to flex my pelvic floor has completely disappeared. Literally like it is disconnected from my brain. Seriously worries me. Though I read that ALS does not typically affect that area...Any insights?
I'm scheduled with a great Neuro at Tufts Medical Center in March, but not only is that a ways out, I'm afraid of what they're going to tell me.
One last thing I feel inclined to add, though I'm not sure of it's relevance, is that I foolish did 4 weeks of an anabolic androgenic steroid back in high school (17 years old). I told my family doctor about it shortly after when I was experiencing some typical side effects like ED, teste pain, etc. and he assured me that while it was stupid of me, one short dose such as the one I did could not have done any long term damage. I want to believe him, but I've always had this bad feeling in the back of my mind that one day I would be diagnosed with something awful and it would be because of that stupid month of gear that I ran back in high school to put on a few pounds before my junior year. I googled AAS + ALS and there was one Italian study I found that suggested there may be a link between the two.
Maybe I'm reading to much into these things, but can anyone on here help put my mind at ease?
God bless
Mikep123
PS - I donated $20 to ALS research during the ice bucket challenge back in 2014. I was a Junior in College. I know it's next to nothing. I wish it could have been more but I was barely able to afford noodles.
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