Very worried I have ALS, any advice is much appreciated

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Dmac7

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Hi there,

Apologies for the length ahead of time.

I want to start by saying that this seems to be an amazing community, and thank you for taking the time to help others understand this better.

On me; I am a 27yo male, with no major health issues my entire life. I do have health anxiety that has skyrocketed recently, and through this I will be sure to define the real symptoms compared to what could be anxiety. I have a Neurologist appointment scheduled for next week. Another preface: Before this all started I had been on a few weeks break from the gym (was an avid lifter for 4-6 days a week, and in June I moved across the country and didn't get much lifting in after that, only a couple of runs. This started first weekend of October, so it's be about 6-7 weeks.

I had a bachelor party coming up on the weekend, and prior I started to feel waves of extreme fatigue and nausea. I went and got COVID tested and it came back negative, and it started to go away so I went on the trip. The first day I napped a lot and then went out in the evening, and did the usual bachelor party drinking. The next day I woke up, showered and then went to pee, and I noticed as I was going to pee my left leg from the knee down felt like it was going to give out. So for the rest of the day I would sit down to pee. It was almost like a fatigue shakey feeling. As the day went on I noticed that I started to feel more off- towards the end of the day I began what my friends called a panic attack, however I think it was a small mild seizure (I have had panic attacks and this only resembled it a little). My face and lips went numb and tingly, along with my hands and feet (like tv static), I was talking extremely fast, I was very weak, and then a body tremor where my entire body shook came over me for a couple of minutes. After I felt like I had ran a marathon or worked out heavy. My body was very relaxed, my legs were a little numb with a brick like feeling in them. After calming down, we went back out a few hours later, and I had shrugged it off as a panic attack. I noticed that my arms had fuzzy tingling and semi-numbness in them from the ring and pinky finger to my elbow (Ulnar Nerve area) on both arms. This persisted for a few hours, until we were at a club and danced for some hours. After this evening my calves were sore for like 4-5 days (not sure if that's related or just from excessive workout of them). At the end of that evening when laying in bed, I was about to fall asleep when I noticed that it felt like a raindrop hit my arm (in a perfectly dry bedroom) and where that feeling was there is now a small rice-sized bump (again not sure if this is related to anything).

The rest of the weekend goes mostly fine. The last evening after the leaving the bar my legs felt like they had cinderblocks tied to them while walking to the Uber. I've never felt anything like it before.. I could walk fine but it felt like I was lifting weights on my feet. When I arrived back at the airbnb and sat for a while it went away.

I get back from the weekend and everything seems fine. I end up getting a small cold for maybe a day, but that's about it. I was very fatigued but wrote it off as a hangover. Until the tingling in the hands came back, the same one from the ring and pinky fingers to the elbow. It would come and go for hours at a time on certain days, no rhyme or reason it seemed. Sometimes it wasn't there at all. So I decide to go to the gym (first time in a while), and at the gym I noticed I seem short of breath, after one lift I feel winded, almost tripping over myself. I notice my arms on the tingly side feel weaker than before, and weaker than the other side of my arms. I get about 2 lifts in and leave early.

Then when I walked to the local grocery store, I noticed my left leg was feeling weird. It had the tingles as well, accompanied by a burning sensation with some shooting pains. I wasn't limping, but it was very uncomfortable, and almost a little bit wobbly (like it was going to give out). Over the course of a few days, it only shows up when I'm walking a long distance, but not just around the apartment. The tingling was still coming and going.

At this point I schedule an appointment with my primary. She gave me a physical exam of reflexes, and then runs all the blood tests pretty much possible and everything seems to come back clear. At this point I think, maybe it's all in my head. Maybe it's exhaustion, lack of sleep, anxiety, and pinched ulnar nerves. I look up ulnar nerve stretches and did some of those, and it seemed to work, the full tingling subsided. However I still noticed random tingling and pins and needles in my left leg and the arms at random.

Regardless, I pushed on and tried to stop thinking about it. I went on some hikes in the mountains and things seemed to be mostly normal. Then the fatigue and shortness of breath hit. I would get bouts of fatigue again, but I would also get bouts of shortness of breath. My oxygen itself was completely fine, but I felt like I couldn't inflate my chest enough, although it was expanding. It would happen while I was doing something and then fade away when I rested, but overall could last 30min-hour. Then came the chest pain, which would be mostly accompanied by the shortness of breath. I would feel a sharp stabbing pain in my left chest. One night it kept me up all night. This was accompanied by a soft fluttering, almost a vibration. I almost went to the ER but held off because I didn't think it was a heart attack (wasn't). I went back to the doctor. They did a chest xray and ekg; xray was normal, said chest was fully expanded, no fluid or anything. Ekg had a *small* abnormality that he said was not a cause for any concern, but gave me a referral for a cardiologist if I wanted to go, which is scheduled for a month out.

And then the random shooting pains came. I would get (along with the random pins and needles) random shooting pains all over my body (mostly on the left side but on both). Mainly by the inside of my elbow, the back of my knees, down my calves and thighs, in my fingers, my armpits, my groin, and in my neck. Sometimes even in my testicles (sorry if TMI). The shortness of breath was less frequent but still there occasionally. The heart pain went away. My left leg still gets some pain and pins and needles when I over exert it at this point. There was only point I was standing in line in a store and I started to get dizzy and shortness of breath and chest pain, but when I got home and rested it went away.

It again starts to fade towards the weekend of the 6th. All that I notice mostly is just *extreme* fatigue. Like I just want to keep laying around and sleep. But since I felt better again, I made plans and drank some coffee. I went out friday night for a comedy show, and then again saturday for a concert. Saturday night I could hardly stay awake. I also noticed that while drinking (I went out for halloween as well) that I don't feel any of this. Maybe the occasional leg cramp or tingling. Anyways I'm so tired I leave the concert very early and come home and go to bed.

This is where it all takes a turn for the worst. The left chest pain comes back extremely bad. To the point that my left pectoral is tender to touch. No more shortness of breath, but the pain and fluttering lasts for days. I can't even lay on my left side. This is accompanied by more WORSE shooting pains, along with tingling and pins and needles all at random. Along with fatigue (lots of excessive yawning), some diarrhea/constipation, lots of gas, little appetite, and trouble starting urinating. Overall I just do not feel well.

My mom ends up flying in to come stay with me and go back to the doctor. We go to my primary's office again, (it's a group of doctors not one set person), and I see a lady I haven't seen before and give her the low down of everything going on. She gives me this thing to wear on my heart for a few days and send back, refers me to a neurologist, and also prescribes me Cymbalta for pain and anxiety.

I saw her on the 9th, and since then things have progressively gotten worse, or at least I believe them too be. The heart pain went away, but had occasional fluttering. The Cymbalta seemed to *mostly* help my nerve pain, but definitely didn't calm my anxiety. This is where I learned about ALS (er rather not learned about it for the first time, but looked up info about it). Prior to this I had discussed peripheral neuropathy, or even MS with my primary before being referred, but when I found more out about ALS is when the actual panic began to take place.

Symptoms over the last week got worse. I became more shaky, I have been yawning a lot, am fatigued to the point my mom and I had to return to my apartment early because I was so out of it. My arms, hands, legs and feet had the occasional random shooting pains. I noticed I was extremely jittery, and jerking often (like my leg or arm or finger felt like I needed to move it or would jerk), I randomly got RLS, I have absolutely no appetite with occasional nausea, and my hypnic jerk got worse to the point it's waking me up *every night.* (I've had hypnic jerk before falling asleep for a long time, and the occasional falling dream and jerk would wake me up but this became every night at like 3-4am). I felt like I had taken high dosage of adderall with coffee on top all day, every day, but also exhausted, and with shooting pains and burning/tingling/numbness.

But again, it began to fade mostly and I started to feel better, so I decided to try working out again (first time in weeks), and went for a run and did some easy at home work outs. I could fully feel it in my left leg. It's like a cramping in the calf, but also burning and tingles in the foot, and some charlie horse up the thigh. Stretching before and after the workout helps a ton, but it usually comes back. Well then the twitches came. After this workout I began having those twitches under my skin all over my body, heavily in my legs, but really everywhere (Idk if these are what fasciculations are, but it feels like little bumps that last a second or two in the muscle, like little heart beats). This is all over. And I've felt these before in the past so I tried to overpower my anxiety and say it's just from a first workout in a long time. Also a few hours after the workout my legs went numb for a short time. That night it wasn't the jerk that woke me up, but rather these muscle twitches.

Since the first day the twitches have subsided mostly, I get one here or there every hour, mostly in the legs but really everywhere. I continued to workout and stretch everyday, and notice my left leg is just so very tight and charlie horses so easily. Both my calves cramp very easily as well. After all of this (up to today), I can walk normal but I get burning and tingling in my left foot, and cramping in the left leg. I notice when I put my weight on my left leg, the heel has a sharp pain in it. My left hand has started to get a little bit stiff in the thumb and pinky. I noticed my joints are popping constantly. I get a decent amount of the muscle twitches, and random pains here or there still (note on the pains: if one sticks around for more than a few seconds it can hurt to touch). The feeling jittery and jerks have gone away. I also noticed some of the twitching my throat which concerns me.

So overall that's where I'm at. some notes on overall symptoms, and some things left out: I have full range of motion still in everything. I get occasional neck and back stiffness. Sometimes I sneeze a tingling goes down my neck to my arms and back. I have been clearing my throat a *lot* over the past few weeks, and spitting up a lot too. I feel my voice sounds a bit strained and can't get as a high a pitch anymore but that could be in my head. I've noticed I'm out of breath a lot when I talk over the past few weeks, it hasn't gotten worse but hasn't gotten better. My jaw will randomly get in so much pain and so tight and lock up for a short period of time where it hurts to talk, chew (and chewing I can feel it in my teeth and gums), then gets better. As of today I've notice it seems like my left leg is flexed a lot, just the calf and foot. I have not noticed and atrophy (other than me not working out for weeks-months, but nothing other than that). I feel like I've lost a substantial amount of weight, but really it's only been about 5-6lbs overall. I literally have no appetite, and can go almost an entire day without eating. Today my left hand seems a little tight or sore, especially the thumb. I notice when I put my leg up on my knee my foot instantly goes to static (like sleep state). This is on both feet. I've also noticed random waves of blurred vision in my right eye. I still am having delayed urination when I have to go. I'm also stumbling over a lot of words, which could be anxiety I'm not sure.

Last night I did some tests on myself (best I could), and things seemed normal (I'm not a professional but did them out of piece of mind). I had the reflexes I could test on myself, and am able to move everything (my left leg is extremely tight though, and after doing stretches or things I get some pins and needles and burning in it). my limbs are all pretty much the same size.

The last thing I'll say is that I've been completely and utterly run down due to anxiety. Ever since the night after the concert, I've been in a constant state of anxiousness. I am constantly reading stories and googling, I consistently go into panic mode, shaking, palms sweaty, heavy breathing, numbness. Literally multiple times a day. I don't sleep much, and I can't focus on work. I've never had anxiety like this, and I am getting help for it.

At this point the only things I can say for sure are real and not anxiety induced are the pains, charlie horses, tightness, muscle twitches, and the pins and needles, and numbness (that comes with activity rather than anxiety induced). I've literally now began to think about every process I do, I think about my walking and whether I'm walking right or not (always been a clumsy walker so that's normal for me, but I'm like walking formally now because I think about every step), I'm thinking about my eating and whether I can swallow fully, I'm thinking whether or not my voice sounds normal, if my muscles look as they normally do, if my weight has dropped substantially, etc etc. Every little thing makes me panic, especially if it's new. I do know my body hasn't been right, and something is going on, but I've been in this perpetual state of matching it up to ALS, or brain cancer or something. Do ALS symptoms come and go? Does the weakness come on gradually (as in the cramp/charlie horse lasts for a bit then turns into full immobility)? Can I have all these new symptoms come on at once in a matter of a week or two? Can they be triggered by working out? Does it affect my heart and my breathing this early? Can it cause joint pain and cracking? Are the twitching in my neck affecting my voice? Is all this new stuff anxiety induced and also some side effects of Cymbalta?

Thank you for any advice, thoughts, or input, I truly appreciate it. I have an appointment next week so hope to get answers, but this is driving me literally insane at this point.
 

Nikki J

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It doesn’t remotely sound like ALS. I strongly suggest that even though you should tell doctors everything you condense that considerably for your neurologist visit.
 

affected

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That was truly far too long to expect anyone to read, and yet skimming it there was not a single ALS symptom.

Please read this as you leave this site.

Go see your doctor and follow their advice, but don't return here as it won't help you at all.
 

lgelb

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Some people don't do well with Cymbalta. If it's not helping anything, you can discuss tapering down/off with the prescriber.

Apart from that, anxiety can create everything that you described. There are also lots of viruses besides Covid that can do similar things. And of course there is the likelihood that you have some of each.

I would check in with your primary doc to see if they want more blood work or a urinalysis, but see no reason to worry about ALS.

Best,
Laurie
 

Dmac7

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Thank you for the reply everyone! Appreciate what is done here, and am happy to donate to this amazing cause.

@lgelb - I will say some things did start when I started the Cymbalta. What I was confused about with ALS is whether or not there's consistent pain/tingling, and if the muscle weakness can be slow or not. As in my left leg and left arm/hand have full movement now but feels just weak now, and eventually it will just stop working. For example my left thumb is tight and hurts to move in some ways now, it's tough to stretch it fully out, so could that just be the beginning and soon it will just stop working, or will it just stop working all together, without any prior symptoms?

Also was wondering if bulbar and limb symptoms can happen simultaneously. Of course this has been in my head since I looked it up, and didn't think twice about it, but I've noticed my speaking is strained and if I stop forcing it my voice is now raspy (and have been clearing my throat often). I noticed during the weekend fasciculations on up my neck, and now as of today on my tongue *a little bit*. There's a clicking in my neck sometimes when I move it as well, and some small amount of pain as if there's a lump in my throat. Again I'm not sure if this is all related to anxiety, lack of sleep, dehydrations, and then phlegm and environmental factors, or if this could be along side limb onset. Or if it was limb onset that progressed quickly into bulbar (I'm not sure how fast progression is).

Overall, I was very worried based on my progression of symptoms over the past 6 weeks, and was unclear on how ALS presents itself. I've never felt things like this before (well I've had muscle spasms, but everything else).
 

ShiftKicker

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Hello! Tillie posted the "Read Before" link above and it's a really great resource- you can go through it point by to point to see why what you've posted here does not point to ALS.. Otherwise, your doctor will be an excellent person to speak to about what your symptoms might mean.
 

lgelb

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ALS weakness does not begin with pain and tightness. Things just stop moving the same way. This is not a feeling. It's a fact.

There is not constant pain/tingling, nor does everything ramp up in six weeks. I would focus on sleep, exercise, nutrition and unstressing -- easier said than done, no doubt, but definitely easier than living in fear.
 

affected

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Definitely if you read the post I linked for you carefully, you will find, as Shiftkicker notes, that it really does address your concerns.
It is far better to read it through several times, than ask our members here to answer the same things all the time.
Your doctor is truly your very best resource as they have your full history and can do clinical examinations and objectively note any changes if they occur.
I do wish you the very best.
 
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