enoff03
New member
- Joined
- Nov 12, 2021
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- OH
- City
- Springfield
Hello everyone, my name is Evan and I am 20 years old. My story is exhausting so please just bare with me.
Around 2 years and a half years ago I woke up one day and my arms and legs were weak. I felt like I could barely lift them. It took a couple days or so for that to settle down but then as soon as it was getting better I started having twitches everywhere on my body. My legs , my arms, my back, my hands, my feet, and even my face particularly the eyelids and right below the left corner of my lip. Then the scariest part was I started having trouble swallowing (food in particular) .
I looked up my symptoms and the first thing I saw was ALS. After seeing that I panicked and that immediately prompted me to see a neurologist. I went and saw the neurologist and he tested all the muscles on my body and checked my reflexes and he told me that everything was really good. I then went on to tell him that I was terrified of ALS and he said nothing looked like ALS. He then ordered an EMG on my legs and back to put my mind at ease. He then went on to tell me that if I had weakness from ALS it would show up on the EMG. A couple weeks later I went on to get the tests done and they both came back normal.
I still continued to have symptoms but now I was having trouble breathing and bowel issues. So I got a referral for a neurologist at the Cleveland Clinic. When I saw him he tested my strength and reflexes and everything was normal. He then went on to schedule a respiratory test and I got that done the day I was there. That test also came back normal and he said all of my symptoms were most likely from hyperventilation anxiety. After that appointment the majority of my symptoms got better.
Then 2020 they started up again and I saw another neurologist at the Cleveland Clinic but this time it was virtual. He explained to me that I’ve done a lot of extensive tests and if I had something bad it would’ve shown up by now. He then ordered an EMG on my right arm and right leg and he put in bold on my report “EMG of the right and upper extremity done here at the Cleveland Clinic utilizing a motor neuron disease protocol was completely normal”. That kind of put my mind at ease a little bit.
Then here recently this last month for about a week my balance felt really off and I was having a bad aching sensation in the front of my legs near my shins along with a sharp, aching pain in my left shoulder, which made my shoulder very fatigued and tired while doing something. I was also having pain, stiffness, and weakness in my left had at the time (now it’s in both hands). I still have the left shoulder pain but the balance issue has gotten better. I then went and had another EMG done on both on my legs, both arms and hands, along with my back and the back of my neck and everything came back completely normal.
And that brings us to now, I’m having the twitching all over still, seems like it’s more in the face and legs but it doesn’t stay in one spot as it jumps from body part to body part (don’t know the difference between a spasm and a twitch). Still difficulty with swallowing both liquids and solids. My tongue feels weird as if I’m mildly slurring some of my speech, especially the letter “S”. My legs feel tight, stiff, and jumpy along with the stiffness in my hands and arms with pain sometimes in my shoulders. Back pain along with neck pain. Pain and aching at the bottom of my feet. My joints are popping which is causing stiffness and pain. When I laugh or am in the cold I get this tingling sensation in my face. A lot of nasal drainage and the feeling that my nose is stuffed. To me, my left arm and hand, neck, and face look smaller than they normally did.
And all of these symptoms led me back to the Cleveland Clinic two days ago to see my neurologist and he tested my strength along with my reflexes and said they were normal (even though I thought my legs were jumpy) and he also took a look at my tongue and watched how it moved and he said that looked good as well. All said and done I’ve seen 4 different neurologist including 2 at the Cleveland Clinic.
All of this is causing servers anxiety and I don’t know what to do. It’s scaring thinking about the possibility of having ALS at such a young age, with symptoms starting when I was 18. Does this sound anything like ALS to anyone? Any help or advice would be great, thank you!
Symptoms started in 2019 and I got my first emg done mid to late 2019.
Around 2 years and a half years ago I woke up one day and my arms and legs were weak. I felt like I could barely lift them. It took a couple days or so for that to settle down but then as soon as it was getting better I started having twitches everywhere on my body. My legs , my arms, my back, my hands, my feet, and even my face particularly the eyelids and right below the left corner of my lip. Then the scariest part was I started having trouble swallowing (food in particular) .
I looked up my symptoms and the first thing I saw was ALS. After seeing that I panicked and that immediately prompted me to see a neurologist. I went and saw the neurologist and he tested all the muscles on my body and checked my reflexes and he told me that everything was really good. I then went on to tell him that I was terrified of ALS and he said nothing looked like ALS. He then ordered an EMG on my legs and back to put my mind at ease. He then went on to tell me that if I had weakness from ALS it would show up on the EMG. A couple weeks later I went on to get the tests done and they both came back normal.
I still continued to have symptoms but now I was having trouble breathing and bowel issues. So I got a referral for a neurologist at the Cleveland Clinic. When I saw him he tested my strength and reflexes and everything was normal. He then went on to schedule a respiratory test and I got that done the day I was there. That test also came back normal and he said all of my symptoms were most likely from hyperventilation anxiety. After that appointment the majority of my symptoms got better.
Then 2020 they started up again and I saw another neurologist at the Cleveland Clinic but this time it was virtual. He explained to me that I’ve done a lot of extensive tests and if I had something bad it would’ve shown up by now. He then ordered an EMG on my right arm and right leg and he put in bold on my report “EMG of the right and upper extremity done here at the Cleveland Clinic utilizing a motor neuron disease protocol was completely normal”. That kind of put my mind at ease a little bit.
Then here recently this last month for about a week my balance felt really off and I was having a bad aching sensation in the front of my legs near my shins along with a sharp, aching pain in my left shoulder, which made my shoulder very fatigued and tired while doing something. I was also having pain, stiffness, and weakness in my left had at the time (now it’s in both hands). I still have the left shoulder pain but the balance issue has gotten better. I then went and had another EMG done on both on my legs, both arms and hands, along with my back and the back of my neck and everything came back completely normal.
And that brings us to now, I’m having the twitching all over still, seems like it’s more in the face and legs but it doesn’t stay in one spot as it jumps from body part to body part (don’t know the difference between a spasm and a twitch). Still difficulty with swallowing both liquids and solids. My tongue feels weird as if I’m mildly slurring some of my speech, especially the letter “S”. My legs feel tight, stiff, and jumpy along with the stiffness in my hands and arms with pain sometimes in my shoulders. Back pain along with neck pain. Pain and aching at the bottom of my feet. My joints are popping which is causing stiffness and pain. When I laugh or am in the cold I get this tingling sensation in my face. A lot of nasal drainage and the feeling that my nose is stuffed. To me, my left arm and hand, neck, and face look smaller than they normally did.
And all of these symptoms led me back to the Cleveland Clinic two days ago to see my neurologist and he tested my strength along with my reflexes and said they were normal (even though I thought my legs were jumpy) and he also took a look at my tongue and watched how it moved and he said that looked good as well. All said and done I’ve seen 4 different neurologist including 2 at the Cleveland Clinic.
All of this is causing servers anxiety and I don’t know what to do. It’s scaring thinking about the possibility of having ALS at such a young age, with symptoms starting when I was 18. Does this sound anything like ALS to anyone? Any help or advice would be great, thank you!
Symptoms started in 2019 and I got my first emg done mid to late 2019.
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