Hey guys,
first of all, I'm very sorry for all your struggles with ALS and I do not wish anyone to have this terrible disease.
About me, I am very scared of ALS for like 3 weeks now. It all started about 9 months ago.
I've started having very strong coughing issues while eating/ even drinking and also while being stressed. 5 Months ago I also had pain swallowing, sometimes couldn't swallow and there was pain on the right side of my neck. I've went to the doctor and he was sure about me having Reflux, which he gave me medicine for (Pantoprazole). 3 Weeks after it didn't get better at all, only the pain while swallowing was gone ( and still is gone), but I've started having this twitch in my left hand, which moved into my whole body the next day and to this day, it still twitches everywhere every 5-10 seconds while laying or sitting. 4 weeks into Pantoprazole, I've started having strong stomach issues, pain all over my chest (still have) and musclepain between my neck and shoulder (still have ), went to the hospital and they did a Esophagogastroduodenoscopy and found a esophagitis. They've recommended me to take more Pantoprazole, took the medicine for 3 months, with barely any effect, but the stomach pain went away. They also diagnosed a pretty big hiatal hernia.
Because the medicine barely worked and I also stopped using it, I decided to get surgery done on my esophagus, so a hospital ran tests for 3 days and told me that I've had no issues with my esophagos (???).
Ever since that hospital visit I've started having sleeping issues ( I wake up every 2-3 hours, mostly sleep 4 hours every night), a week later my hands and feet started to fall asleep on a regular basis, my muscles are shaking if I tense them or work out (especially my arms and upper body), my left hand is shaking (especially in the morning), my head is aching every other day, my chewing muscles feel weak and stiff for 2 weeks now, i sometimes have issues with food coming up my throat (once a week), I sometimes cant burp ( there is a lot of air in my throat), coughing has gotten way better, but I still cough like crazy especially after working out.
I've went to a pretty good neurologist in my city and she did one EMG on my left leg and found 2 fasziculations, but it was good overall, all other tests were negative.
Went to a neurology hospital for 4 days, every Test (MRI, LIquor) was negative, they did 2 EMG tests on both legs, found 2 fasziculations on my right leg, but was good overall. They didn't take me serious though, because I am really having anxiety issues about ALS for 3 weeks now (prior to that it was about other serious diseases and the last 5 months have taking a toll on my body/mind). So they've diagnosed me with psychic issues.
The part, which still worries me is the stiffness im mouth, the pain in my shoulder, the constant twitching of muscles everywhere in my body, also them shaking like crazy if I tense them, I also feel like I can't chew as strong as before, I nearly tripped 4 times in the last 4 weeks, sometimes things fall off my hand.
On the other hand, my swallowing issues have gotten way better (still not the best), coughing has gotten less, I've always had a shaky/quiet voice, which is still the same, my tongue has no issues and all I think and talk about is ALS, I look things up on the internet, feel sad because of it and I am kinda getting depressed with the imagination of having it.
So, there are obvious sings of bulbar palsy, but everything started kinda 9/5 months ago and I kinda feel worse, but still am able to do anything. I am still scared as hell and would be interested if anyone has had any advice/ same experience as me.
I know it is very unlikely for a 25 year old, but things happen/especially if the symptoms are there.
Best regards,
Cihan
first of all, I'm very sorry for all your struggles with ALS and I do not wish anyone to have this terrible disease.
About me, I am very scared of ALS for like 3 weeks now. It all started about 9 months ago.
I've started having very strong coughing issues while eating/ even drinking and also while being stressed. 5 Months ago I also had pain swallowing, sometimes couldn't swallow and there was pain on the right side of my neck. I've went to the doctor and he was sure about me having Reflux, which he gave me medicine for (Pantoprazole). 3 Weeks after it didn't get better at all, only the pain while swallowing was gone ( and still is gone), but I've started having this twitch in my left hand, which moved into my whole body the next day and to this day, it still twitches everywhere every 5-10 seconds while laying or sitting. 4 weeks into Pantoprazole, I've started having strong stomach issues, pain all over my chest (still have) and musclepain between my neck and shoulder (still have ), went to the hospital and they did a Esophagogastroduodenoscopy and found a esophagitis. They've recommended me to take more Pantoprazole, took the medicine for 3 months, with barely any effect, but the stomach pain went away. They also diagnosed a pretty big hiatal hernia.
Because the medicine barely worked and I also stopped using it, I decided to get surgery done on my esophagus, so a hospital ran tests for 3 days and told me that I've had no issues with my esophagos (???).
Ever since that hospital visit I've started having sleeping issues ( I wake up every 2-3 hours, mostly sleep 4 hours every night), a week later my hands and feet started to fall asleep on a regular basis, my muscles are shaking if I tense them or work out (especially my arms and upper body), my left hand is shaking (especially in the morning), my head is aching every other day, my chewing muscles feel weak and stiff for 2 weeks now, i sometimes have issues with food coming up my throat (once a week), I sometimes cant burp ( there is a lot of air in my throat), coughing has gotten way better, but I still cough like crazy especially after working out.
I've went to a pretty good neurologist in my city and she did one EMG on my left leg and found 2 fasziculations, but it was good overall, all other tests were negative.
Went to a neurology hospital for 4 days, every Test (MRI, LIquor) was negative, they did 2 EMG tests on both legs, found 2 fasziculations on my right leg, but was good overall. They didn't take me serious though, because I am really having anxiety issues about ALS for 3 weeks now (prior to that it was about other serious diseases and the last 5 months have taking a toll on my body/mind). So they've diagnosed me with psychic issues.
The part, which still worries me is the stiffness im mouth, the pain in my shoulder, the constant twitching of muscles everywhere in my body, also them shaking like crazy if I tense them, I also feel like I can't chew as strong as before, I nearly tripped 4 times in the last 4 weeks, sometimes things fall off my hand.
On the other hand, my swallowing issues have gotten way better (still not the best), coughing has gotten less, I've always had a shaky/quiet voice, which is still the same, my tongue has no issues and all I think and talk about is ALS, I look things up on the internet, feel sad because of it and I am kinda getting depressed with the imagination of having it.
So, there are obvious sings of bulbar palsy, but everything started kinda 9/5 months ago and I kinda feel worse, but still am able to do anything. I am still scared as hell and would be interested if anyone has had any advice/ same experience as me.
I know it is very unlikely for a 25 year old, but things happen/especially if the symptoms are there.
Best regards,
Cihan
