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Jan 25, 2019
Learn about ALS
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


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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Mike, of the 1,273 words and 18 paragraphs you posted...

"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."

There's no need to worry about ALS.
Absolutely nothing you’ve mentioned in this lengthy post has anything to do with ALS. Nothing.

There’s no convincing evidence that an abnormal immune system contributes to ALS.

You mention a host of sensory symptoms— pain, numbness, burning, tingling. Fibromyalgia? Certainly possible. ALS? Absolutely not.

Twitching is common, nonspecific, and meaningless and is not a concern in the absence of muscle function failure and clinical weakness demonstrated on a physical exam. And, if you read the sticky at the top of this forum, you would know that feeling weak is not the same as weakness on a doctor’s exam.

Here’s the sticky:

You’re seeing a neurologist at Tufts in March. Hopefully that will reassure you.
In your exceedingly lengthy post, you have noted exactly zero ALS symptoms. As such, no need to be concerned about ALS and no need to be on this forum.

Good luck to you and take good care.
Thank you all for your replies.


Hear me out though.

I’ve read countless testimonies online of real people who were diagnosed with ALS, who describe having these constant ‘non specific’ widespread fasciculations through their bodies for years and years before one day the disease progressed to a point where clinical weakness is presented. And from there things tend to go down hill quickly.

I twitch literally all day long for 5+ years, and lately the twitching seems to have increased and is also acccompaied by real, albeit mild, weakness in same areas where I’ve been having fasciclations for several years.

You are saying this is not something I should be worried about? Honest question.

Yes, we are saying this is not something you should be worried about.

Your post is very classic for anxiety.

I get the feeling none of us here will be able to soothe your fears, not because there is anything serious to worry about, but because your anxiety is so high. I only hope you will be able to believe the neurologist when he or she tells you what we’re telling you.
People are not telling you not to be worried- only not to be worried about ALS. Lord only knows what you do have, but it does not fit the normal constellation of symptoms that signals ALS.

So, while you may have convinced yourself you have ALS, despite it not really fitting what symptoms you are reporting, the people here are not convinced. Nor do they need to be convinced- this forum is not here for that. You have a whole load of odd symptoms. In the hands of a specialist, they may be able to recognize a symptom pattern- particularly after a physical examination- and be able to tell you what's going on. There is an entire world of weird conditions out there, do not fixate on ALS as the answer.

I'd re-read the post to see some of the differentials and to educate yourself on how this forum works. Read it right to the end- particularly this part:
Some of these are extremely serious. Only your health care team is going to be able to sort it out. Ask them what your symptoms could be and if you need any tests to find out. Let the doctor figure it out. On this forum, we can only tell you if your symptoms resemble our experience of ALS. If we say it does not, please don't continue to ask us. Go back to your physician with an open mind and let him/her figure it out!

When You’re Wrong
When you’re wrong and we tell you it doesn’t sound like ALS, don’t fight with us, find new symptoms or try to re-explain your old symptoms. Fighting with us to prove you have ALS, or wanting to have ALS is a sign of a psychological problem that we can’t help you with on this forum.
We are not here to debate with or try to convince- we answer some questions if we can and provide some advice if possible. This DIHALS subforum is not the primary focus of the forum- the focus is to support those diagnosed with ALS and their caregivers.

Edited to add- If Karen tells you not to be worried, guaranteed there's no need.
Ok. Thank you all and God bless. Though I can’t say that I feel any more reassured, as I know any logical person would read my post and see the words “anxiety” and “hypochondria” and stop reading (whether literally or figuratively). And that was me being complelely transparent with you guys, clearly to a fault. I understand that statistically anxiety is 10000x more likely my problem that ALS. So I can’t blame y’all. But the twitchings and other symptoms I get are absolutely not normal, and now I’ve begun to feel some real weakness in one of my more regular “benign fasciculation regions” over the past years. Weakness / loss of muscle that’s unlike anything I’ve ever felt before in my entire life.

I’m much smarter and more self objective than I think I’m getting credit. And I’ve been dealing with these REAL twitches for years now. And lately they have gone into overdrive, accompanied by the tight muscles followed by REAL weakness and shaking when trying to use the affected area. Completely unprecedented. Like nothing I’ve ever felt before, and I’ve given it weeks to go away and it hasn’t. I pray to God you all are right. But something in my gut is really telling me I’m not out of the clear.

I’ve read the stickies and I will not continue to post here unwantingly. But for folks to tell me that NOTHING I describe sounds like it could possibly be ALS, or that I’d be the first person ever with this type of onset, is just flat out hard to believe.

God bless you all and thank you for trying to put my mind at ease. But I get the sense that you guys think I’m delusional, when really I am not, and I glitch and blip and “fasciculation” all damn day long. Now accompanied by recent onset of new symptoms, consistent with ALS.

Let’s play a game, if what I were telling you we’re in fact real, and not anxiety induced delusions, would you still confidently say that I definitely do not have ALS?
We are not here to play games. You are more than free to disbelieve the members here What we say matters not anyway. What matters is what the doctor you see at Tufts thinks and what any tests that are ordered show.

Please come back and tell us what happened when your evaluation is complete.
Closing thread. Mike- you were asked to wait till after your doctor's appt to post.
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