20 year old Scared I have ALS

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enoff03

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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.
 
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Clearwater AL

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enoff03, one of your last paragraphs...

"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 said and done I’ve seen 4 different neurologist including 2 at the Cleveland Clinic."

Me and I am sure other members have no idea what it would take to convince you that you do not have ALS..

Four different Neurologists and two at the Cleveland ALS Clinic.

Also....

"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”.

Key words... "he put in bold on my report." That is very very unusual... apparently he was trying to make
it clear to you... you do not have ALS. Your EMG was normal. (After previous EMG or EMGs.)

Then there are the odds... you wrote this began when you were 18 years old. You've apparently been burdened
with this for two years. The odds alone being 18 then 20 years old having ALS is in the million to one.

Either your parents or you have fantastic health insurance or money is no problem.

You have so much life ahead of you and the 20s can be some of the best and happiest times of your
life. Please get help for your serious Health Anxiety so you can move on.
 
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affected

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Wow honey, please realise you seriously need some help so please talk to your parents, or another adult family member you trust and tell your doctor your fears.
It is absolutely not appropriate to post like this to the terminally ill however - you are too young to understand just how disrespectful it is to have all these clear examinations from very smart, highly specialised doctors and cry to us anyway.
Please, block this site and never return, but do get help as you truly can get past this.
 

enoff03

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I’m not here to try and offend anyone, I’ve been looking through this forum ever since I started symptoms. I genuinely made that post because before all of this stuff happened I was a healthy 18 year old and I’m just lost in the sense of what’s wrong with me. I have all of these symptoms and nobody has been able to figure out anything. It’s just frustrating, exhausting, and scary.
 

Nikki J

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I think you need to work with your family doctor. You also need to treat your stated severe anxiety. Whether or not there is anything wrong physically it is clearly impacting your life very badly. You have had multiple test and multiple specialists tell you it isn’t ALS so you need to put that behind you, get treatment for what you know you have and then see if there are any symptoms left. Blocking this and other ALS sites would be a great start as they feed your worry
 

enoff03

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It’s hard to just put everything behind you when you’re experiencing things like swallowing issues with everything, the speech issues, the twitching, and the stiffness and jumpiness to my legs which makes it seem like my reflexes are exaggerated. Those are my most worrying symptoms.
 

Nikki J

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It is hard work yes but spending time trying to get strangers on the internet to disagree with the opinions of multiple experts is completely pointless and not helping you in the slightest.

the way to feeling better is to work with your doctor as I have stated. It is very possible that the doctor who put all your symptoms down to anxiety was right

I am going to close this thread and ask you to leave here for your own good.
 
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