20 Years old, going on year 3 of slowly worsening symptoms...

[danny1435]

I know what you’re thinking. But these symptoms are very real. . I am so sorry to bother all of you becasue I know you get these messages a lot. but please hear me out here

I am 20. About 3 years ago, when I was 17, I felt my first symptoms.I vaguely remember feeling somewhat heavy or lackadaisical suddenly. My arm felt heavier when I held my phone for example. This lasted for a solid week until ALS popped in my mind. Yes, at this point it was nowhere near als symptoms but, very soon after, I’m not sure how exactly it was ordered, but my left calf was noticeably smaller, especially the muscle to the right of my shin, on the inside on my left leg. (Unsure of the actual term for this muscle) I could feel the leg was definitely weaker, and even awkward to walk on. It felt way off.

Very soon after I felt this (or possibly shortly before, it’s fuzzy in my memory), twitching started becoming very prominent in my body. On the atrophied (or very seemingly atrophied) muscle, and all around my body. I then realized the muscles in my lower right arm, around my wrist, and even my thumb muscle, had become noticeably shriveled when compared to my left hand.

The thing that really got my attention with this is that I am RIGHT HAND DOMINANT.... so the right arm and hand would have no logical reason for being so much smaller. And when I say smaller, I mean specific muscles I see that are much different in size and girth. My hand felt heavy as well. So all of these symptoms combined drove me to get an EMG done 3 months after the symptoms began, still age 17. Results came back and the doctor said although twitching was detected, no further abnormalities were found. I was diagnosed ethnic BFS.

This did not give me much peace because the SYMPTOMS is what was scaring me. The clean EMG did not make my ALS symptoms disappear. It did not solve an issue. But for the next 2 years, I did my best to put it to the back of my mind. All symptoms—twitching, weaker left leg, smaller and heavier right arm... they didn’t go away. I didn’t always notice the arm issue, but the leg issue was always felt. It felt tired, weak, much less powerful than my right leg. I ran track for my senior year and had no issues. No progression really ever was felt besides the initial symptoms.

Until about two weeks ago. This has always in the back of my mind since I first saw the issues yess ago but it came to the forefront for some reason two weeks ago, maybe becasue I felt like I was walking with less power or felt like my left leg was being way less strong (sorry for lack of better term I’m just stressed). I then checked my body closely for any signs of progression, as it had been 2 years. Oh no.

1.) I found my left leg’s “near-shin” muscle around my left calf to be noticeably even smaller than it had been years before. This was not a welcome sight. Also my thigh seems to be noticeably smaller now too around my knee area. Which feels like exactly how the disease would progress.

2.) My right arm, the muscle right above my elbow on the side of my arm, near my bicep... wow. Not only has it noticeably shrunk, many twitches have started there. And my arm is feeling weak. I tried opening a big box of pop tarts, for example, and it was as if my arm was dead. I couldn’t do it. Left arm gave it a try and got it with no issue. Again, I’m right hand dominant. This scares me to the point of depression. It feels like I’m on my death bed. This seems dramatic but I really feel like I’d be lying to myself to say this isn’t serious. Also, just today I was playing frisbee and could feel afterward my right pectoral muscle has a huge dent/crater in it.... it’s amazing how much fear and dread that caused me.

3.) I’ve also felt some weird shortness of breath at random moments, but I wonder if its anxiety. But it’s accompanied by twitches deep in my abdomen, feels like diaphragm. And all around my chest area. All the time, twitches. Ribcage, Back, abdomen, twitching al the time. Sometimes it feels feels tihin my chest which scares me.

Sorry for the long post, but I need some honest answers. Could this logically NOT be ALS? It’s my biggest fear and it’s starting to distract from everything else in my life. It’s driving me to depression. It started at 17, NO familial history... I can still walk, write, talk, stand on tip toes, heels, breathe (though it might be off, not 100% with that one) but there is undeniable atrophy in my leg and arm and now I think even pectoral muscle.

Again I am so sorry to bother all of you becasue I know you get these messages a lot. But it’s distracting from my new relationship with an amazing girl and my second year of college just starting

 

[Atsugi]

They don't use paragraphs in Pennsylvania?

 

[Clearwater AL]

1. Take that brick of text, copy and print it.

2. Make an appointment with a doctor.

3. Take the copy with you and let him/her read it so you don't forget anything.

4. Check back with us 'if' he/she refers you to a Neurologist.

5. (You've seen one previously and you had a clean EMG.)

6. Until then... there's not much anyone here can help you with until then.

 

[Atsugi]

I know what you’re thinking.
***No need to post, then, is there?

But these symptoms are very real.
***Anxiety causes very real symptoms to manifest physically.

I am so sorry to bother all of you becasue I know you get these messages a lot. but please hear me out here. I am 20. About 3 years ago, when I was 17, I felt my first symptoms.
***If you had any symptom of ALS three years ago, you would probably be dead by now. At the very least, you’d be severely disabled. So we no the symptoms from three years ago were not from ALS.

I vaguely remember feeling somewhat heavy or lackadaisical suddenly. My arm felt heavier when I held my phone for example. This lasted for a solid week until ALS popped in my mind.
***A muscle that is affected by ALS does NOT “feel” different at all. It is weakened dramatically, and does NOT have any corresponding feeling of heaviness or anything else.

Yes, at this point it was nowhere near als symptoms but, very soon after, I’m not sure how exactly it was ordered, but my left calf was noticeably smaller, especially the muscle to the right of my shin, on the inside on my left leg. (Unsure of the actual term for this muscle).
***IF there is atrophy, a doctor will see it. IF there is atrophy, there are many possible reasons. However, regarding ALS, this is how it works: In ALS, a nerve in the brain is destroyed. Then, that muscle can no longer tell its corresponding muscle to move. So the muscle doesn’t contract. This is weakness. After a muscle has been laying weak, unmoving, unable to move, laying limp and useless, then the muscle begins to thin out, appearing smaller. This happens some weeks or months AFTER the muscle has been paralyzed, flaccid, useless, limp.

I could feel the leg was definitely weaker, and even awkward to walk on. It felt way off. Very soon after I felt this (or possibly shortly before, it’s fuzzy in my memory), twitching started becoming very prominent in my body.
***Twitching in ALs doesn’t act like this. Twitching like you describe is probably subconscious anxiety.

On the atrophied (or very seemingly atrophied) muscle, and all around my body. I then realized the muscles in my lower right arm, around my wrist, and even my thumb muscle, had become noticeably shriveled when compared to my left hand.

The thing that really got my attention with this is that I am RIGHT HAND DOMINANT.... so the right arm and hand would have no logical reason for being so much smaller.

And when I say smaller, I mean specific muscles I see that are much different in size and girth. My hand felt heavy as well. So all of these symptoms combined drove me to get an EMG done 3 months after the symptoms began, still age 17.

Results came back and the doctor said although twitching was detected, no further abnormalities were found. I was diagnosed ethnic BFS.
***Apparently the doctor wasn’t concerned about the “atrophy.”

This did not give me much peace because the SYMPTOMS is what was scaring me. The clean EMG did not make my ALS symptoms disappear. It did not solve an issue. But for the next 2 years, I did my best to put it to the back of my mind. All symptoms—twitching, weaker left leg, smaller and heavier right arm... they didn’t go away.

I didn’t always notice the arm issue, but the leg issue was always felt. It felt tired, weak, much less powerful than my right leg.
***Already covered this. None of this is ALS.

I ran track for my senior year and had no issues.
***Pretty healthy body.

No progression really ever was felt besides the initial symptoms. Until about two weeks ago. This has always in the back of my mind since I first saw the issues yess ago but it came to the forefront for some reason two weeks ago, maybe becasue I felt like I was walking with less power or felt like my left leg was being way less strong (sorry for lack of better term I’m just stressed). I then checked my body closely for any signs of progression, as it had been 2 years. Oh no.

1.) I found my left leg’s “near-shin” muscle around my left calf to be noticeably even smaller than it had been years before. This was not a welcome sight. Also my thigh seems to be noticeably smaller now too around my knee area. Which feels like exactly how the disease would progress.
***No, it’s not.

2.) My right arm, the muscle right above my elbow on the side of my arm, near my bicep... wow. Not only has it noticeably shrunk, many twitches have started there.
***Doesn’t count toward ALS.

And my arm is feeling weak. I tried opening a big box of pop tarts, for example, and it was as if my arm was dead. I couldn’t do it. Left arm gave it a try and got it with no issue. Again, I’m right hand dominant. This scares me to the point of depression. It feels like I’m on my death bed.
***No, that’s not what a death bed feels like. I’m pretty sure about that.

This seems dramatic but I really feel like I’d be lying to myself to say this isn’t serious. Also, just today I was playing frisbee and could feel afterward my right pectoral muscle has a huge dent/crater in it.... it’s amazing how much fear and dread that caused me.

3.) I’ve also felt some weird shortness of breath at random moments, but I wonder if its anxiety.
***I think you’re on to something, now.

But it’s accompanied by twitches deep in my abdomen, feels like diaphragm. And all around my chest area.
***Classic stress. Are there any big changes happening in your life?

All the time, twitches. Ribcage, Back, abdomen, twitching al the time. Sometimes it feels feels tihin my chest which scares me. Sorry for the long post, but I need some honest answers. Could this logically NOT be ALS?
***Never saw ANY ALS in any of this post.

It’s my biggest fear and it’s starting to distract from everything else in my life. It’s driving me to depression. It started at 17, NO familial history... I can still walk, write, talk, stand on tip toes, heels, breathe (though it might be off, not 100% with that one) but there is undeniable atrophy in my leg and arm and now I think even pectoral muscle.

Again I am so sorry to bother all of you becasue I know you get these messages a lot. But it’s distracting from my new relationship with an amazing girl and my second year of college just starting.
***BINGO. Found your problem.

 

[danny1435]

Sir, I thabk you for you response. I apologize for my lack of paragraphs, I’m sure that was a pretty jumbled post. And I want to apologize for posting this on this forum, as many here are suffering and I know people like me can come off as very offensive. But I have had these symptoms for so long and they are not getting any better. I really do trust your words, however. This has been a persistent issue for almost 3 years, so I’m not sure if it’s college/girlfriend that’s causing any of it. But it very well could be. I will keep all of this in mind. As I type this I feel deep twitches in the center of my chest... but I trust it is nothing. Thank you again for your reply.

I’d also like to add that the doctor checked me out years ago, and my leg seems to be much more noticeably smaller as my father finally admitted he noticed a difference a few weeks ago.

 

[lgelb]

I'm with Atsugi and Al. All this is "feeling, not failing" stuff, and you've had it so long, even less likely to be anything.

I understand you want your symptoms gone, so as not to worry you, but we all have symptoms. You will have some little niggles all your life. If you let them become worries and take over your life, though, that's on you, not them.

The way you know when something is serious is when you can't ignore it, because it stops your life. Don't tell me this applies to your twitches and asymmetry (which we all have) now, because it doesn't. Just move on with your real life, your relationship, college, etc. and be thankful that you can.

Best,
Laurie

 

[danny1435]

Thank you for the response Laurie. My biggest fear out of all of this is the atrophy, not even specifically assymetry... if my left and right sides were just slightly different I could find peace. But the thing is, I feel very noticeable differences in my calf size, for instance. My right is bulky, meaty... my left calf is like “flat” kind of, and very much less bulky and meaty. Also, a HUGE issue I just noticed yesterday is that my right pectoral muscle is like almost gone.... when I flex it, the only thing that appears is the muscle right next to my armpit. But the rest of the pectoral muscle for inward of my sternum is GONE. Now, I’ve never had very big pectoral muscles but this is frightening as I can see a very startling gap of no flesh, and my left pectoral has literally no sign of any of this. Would 3 years really be long enough to be almost dying as some are saying? Or could 3 years of symptoms realistically be this slow to onset? Nothing is getting better, I’m only noticing more and more issues...

 

[ShiftKicker]

I don't think you're going to get anyone here to agree with you about ALS. You have posted an essay, but unless I missed it, nowhere in that did you say you'd visited with a doctor recently- and what they told you if you did. If you did, and I missed it, apologies.

Regardless, posting your list here and avidly researching symptoms other people have reported and comparing to your own, will net you zero benefit. Only a doctor can actually detect and diagnose real atrophy. I mean, you can tell us your pec is smaller on one side, etc, but only a doctor is going to be able to properly assess and tell you what they see, what they feel your next step is, and what you should be doing going forward.

So, advice is to visit a doctor. Not because anyone here thinks you have ALS, but because if a person is worried about their health, they'd be better off seeing a doctor than posting to strangers on the internet and trying to convince them of something they can't actually assess for you.

Please, no more listing symptoms here- see a doctor and get proper medical attention.

Best wishes

 

[danny1435]

shiftkicker— those words were very eye-opening. The only real answer is to contact my doctor again. I apologize for bringing this issue to this forum. Thank you all for your help. Sending love to all. I will not post again.