Breezys twin
New member
- Joined
- Apr 17, 2025
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MS
- City
- Jackson
(Disclaimer: lots of context that doesn’t sound like ALS, but I just got told that my anterior horn cells may be messed up)
I am 20 years old. Very very active. I play baseball and would spend hours upon hours in the gym or on the basketball court every single day.
I had almost perfect health, but I went to Kansas to play baseball in front of some MLB scouts and the trip got cut short.
However, while there, I experienced severe weakness in my hamstrings. I couldn’t squat and definitely couldn’t hold it if I forced myself. Well I didn’t think anything of this because I thought maybe I just had nerve compression from the 14 hour drive.
(This is important to mention once you read the read the rest of the post… when I left I was very scared because I had never went on a trip like that by myself. So I had severe anxiety and cried uncontrollably for 5 hours.)
When I left and came back home, I was full of anxiety. I thought the world was ending for absolutely no reason. Maybe it was the shoulder injury and me not being able to play baseball that put me in a midlife crisis but I randomly just thought the worst.
2 hours left of my car ride home and my feet went to sleep. I pushed through and kept driving and then my feet started tingling very bad and went numb.
They stayed “asleep” for 2 weeks. I had little to no pulse in my feet and then the blood started pooling when I would sit down. I had weird cardiovascular symptoms and thought maybe it was just small fiber peripheral neuropathy.
When I got back home, my digestive system shut down completely. I couldn’t poop, I couldn’t eat without feeling extremely nauseous, etc.
I was very uncomfortable for a few weeks, but the real worry came when I started having trouble swallowing. I started experiencing severe restless leg syndrome, my hands and legs were very weak, my legs started twitching, and I had absolutely no balance.
I went to Atlanta to go see the Braves and getting on an elevator caused me to feel like I was going to fall through the floor. I started experiencing severe presyncope, I checked my blood pressure one time and it was 180/133, I had gone 3 weeks without pooping at one point, and more.
Then, more fear came when my muscles felt like they were shutting down. I already stated I was weak, but my arms and legs completely shut down. I went from dunking and squatting 315 pounds to not being able to bend my legs or do a single push up. Something was seriously wrong and I was told it was anxiety.
If anyone thinks this is anxiety just don’t respond. (I understand cortisol and what it does to the body, but apparently I wouldn’t have had a significant amount in my body according to all the doctors I spoke to).
I did have multiple steroid shots before this though.
Anyways, my limbs shut down, I became light sensitive, kept almost fainting, developed vertigo, had severe Anisocoria, tingling in my hands and feet was very strong and I was completely useless just laying in bed.
One night I felt good enough to go get something to eat in the kitchen, and my grandfather spoke to me while I was warming up food. He asked me a question and when I tried to answer, I couldn’t move my mouth. My face was numb and I was spitting trying to move my lips. I thought I was having a stroke.
I went to the emergency room and did all the imaging we could… and nothing. I had a million dollar work up and no doctor can tell me what was going on.
I’ve been clinically diagnosed with: dysautonomia, sensory nerve changes, and now my motor nerves are being questioned.
I saw a brilliant neurologist and he believes this is all separate things. While I respect him more than anyone, I find it hard to believe these symptoms (all connected through the nervous system) would just randomly manifest at the same time or within a few months of eachother.
After these days and nights of malfunction, my body started to regulate just a little bit. My jaws and hands would become very fatigued when chewing or washing dishes, my vision became so blurry I thought I was going blind, and when I was entering sleep, my breathing would stop and I’d wake up gasping for air, and as weird as it sounds, my hearing would stop too.
I started experiencing weird feelings where my chest would feel like it stopped and then I got a warm rush.
Long story short, I was experiencing some weird things.
And to prove this wasn’t in my head…
My symptoms stopped. (Coincidentally around the time I started taking anxiety medicine.)
However, after 3 months of little to no symptoms, I woke up with extreme tingling in my feet, severe vertigo, and an internal buzzing that made me feel very off.
Then, a bunch of weird symptoms later, my right leg started tingling, felt weak, and then started atrophying. I have a little bit of foot drop and noticeable atrophy (diagnosed by the neurologist).
So my muscle feels numb, I’m weak and it’s atrophying. Well I have 3 bulging discs in my lumbar spine… but then, my left arm has started atrophying.
My tongue has atrophied, and I am clinically weak in my left hand.
I will spare everyone the extra information, because yall best believe this is just a little bit of info compared to what I’ve been experiencing.
Long story short: my right leg is atrophied and weak. My left arm is atrophied and weak. I have trouble swallowing. I have fasciculations. And Im now being sent to New Orleans to see a neuromuscular specialist after my emg came back clean and I have no upper motor neuron signs.
If ALS can present like this I’d like to know because from everything I’ve read so far, it doesn’t cause 2/3 of my symptoms, but I cant get any answers and the neuro I spoke to suggested that ALS is a condition caused by multiple triggers.
Ask questions and if I wasn’t clear enough in anything point it out. But I typed this quickly and I lack the faith in an answer to the point where I don’t expect an answer anymore and don’t care about to proof read.
I am 20 years old. Very very active. I play baseball and would spend hours upon hours in the gym or on the basketball court every single day.
I had almost perfect health, but I went to Kansas to play baseball in front of some MLB scouts and the trip got cut short.
However, while there, I experienced severe weakness in my hamstrings. I couldn’t squat and definitely couldn’t hold it if I forced myself. Well I didn’t think anything of this because I thought maybe I just had nerve compression from the 14 hour drive.
(This is important to mention once you read the read the rest of the post… when I left I was very scared because I had never went on a trip like that by myself. So I had severe anxiety and cried uncontrollably for 5 hours.)
When I left and came back home, I was full of anxiety. I thought the world was ending for absolutely no reason. Maybe it was the shoulder injury and me not being able to play baseball that put me in a midlife crisis but I randomly just thought the worst.
2 hours left of my car ride home and my feet went to sleep. I pushed through and kept driving and then my feet started tingling very bad and went numb.
They stayed “asleep” for 2 weeks. I had little to no pulse in my feet and then the blood started pooling when I would sit down. I had weird cardiovascular symptoms and thought maybe it was just small fiber peripheral neuropathy.
When I got back home, my digestive system shut down completely. I couldn’t poop, I couldn’t eat without feeling extremely nauseous, etc.
I was very uncomfortable for a few weeks, but the real worry came when I started having trouble swallowing. I started experiencing severe restless leg syndrome, my hands and legs were very weak, my legs started twitching, and I had absolutely no balance.
I went to Atlanta to go see the Braves and getting on an elevator caused me to feel like I was going to fall through the floor. I started experiencing severe presyncope, I checked my blood pressure one time and it was 180/133, I had gone 3 weeks without pooping at one point, and more.
Then, more fear came when my muscles felt like they were shutting down. I already stated I was weak, but my arms and legs completely shut down. I went from dunking and squatting 315 pounds to not being able to bend my legs or do a single push up. Something was seriously wrong and I was told it was anxiety.
If anyone thinks this is anxiety just don’t respond. (I understand cortisol and what it does to the body, but apparently I wouldn’t have had a significant amount in my body according to all the doctors I spoke to).
I did have multiple steroid shots before this though.
Anyways, my limbs shut down, I became light sensitive, kept almost fainting, developed vertigo, had severe Anisocoria, tingling in my hands and feet was very strong and I was completely useless just laying in bed.
One night I felt good enough to go get something to eat in the kitchen, and my grandfather spoke to me while I was warming up food. He asked me a question and when I tried to answer, I couldn’t move my mouth. My face was numb and I was spitting trying to move my lips. I thought I was having a stroke.
I went to the emergency room and did all the imaging we could… and nothing. I had a million dollar work up and no doctor can tell me what was going on.
I’ve been clinically diagnosed with: dysautonomia, sensory nerve changes, and now my motor nerves are being questioned.
I saw a brilliant neurologist and he believes this is all separate things. While I respect him more than anyone, I find it hard to believe these symptoms (all connected through the nervous system) would just randomly manifest at the same time or within a few months of eachother.
After these days and nights of malfunction, my body started to regulate just a little bit. My jaws and hands would become very fatigued when chewing or washing dishes, my vision became so blurry I thought I was going blind, and when I was entering sleep, my breathing would stop and I’d wake up gasping for air, and as weird as it sounds, my hearing would stop too.
I started experiencing weird feelings where my chest would feel like it stopped and then I got a warm rush.
Long story short, I was experiencing some weird things.
And to prove this wasn’t in my head…
My symptoms stopped. (Coincidentally around the time I started taking anxiety medicine.)
However, after 3 months of little to no symptoms, I woke up with extreme tingling in my feet, severe vertigo, and an internal buzzing that made me feel very off.
Then, a bunch of weird symptoms later, my right leg started tingling, felt weak, and then started atrophying. I have a little bit of foot drop and noticeable atrophy (diagnosed by the neurologist).
So my muscle feels numb, I’m weak and it’s atrophying. Well I have 3 bulging discs in my lumbar spine… but then, my left arm has started atrophying.
My tongue has atrophied, and I am clinically weak in my left hand.
I will spare everyone the extra information, because yall best believe this is just a little bit of info compared to what I’ve been experiencing.
Long story short: my right leg is atrophied and weak. My left arm is atrophied and weak. I have trouble swallowing. I have fasciculations. And Im now being sent to New Orleans to see a neuromuscular specialist after my emg came back clean and I have no upper motor neuron signs.
If ALS can present like this I’d like to know because from everything I’ve read so far, it doesn’t cause 2/3 of my symptoms, but I cant get any answers and the neuro I spoke to suggested that ALS is a condition caused by multiple triggers.
Ask questions and if I wasn’t clear enough in anything point it out. But I typed this quickly and I lack the faith in an answer to the point where I don’t expect an answer anymore and don’t care about to proof read.
