lifelover
Member
- Joined
- Oct 7, 2022
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FI
- State
- OU
- City
- Oulu
Hi all!
I am 28 years old man from Finland. Father to 0,3 and 5 years old kids, and husband to my beloved wife.
In advance I want to say how sorry I feel for you everyone, especially you with diagnosed MNDs and to those who are taking care of ones. You are in my heart nowadays every moment. I dont want to be understood wrong, neither I dont want to argue with anyone. If I say something that is hurting someone, tell me, I dont know how to talk about this. My english isnt so good either, so that is making this even more difficult.
My symptoms has started with progressive general fatique over 2 years. I've complained about it to my wife now and then. Still, it hasnt bothered me too much to not to be able to do my job or any other tasks. It has just been kinda like a feeling that I am getting a flu, but it never came.
In december 2021 I got covid-19. My symptoms were little fever, cough, sore throat, loss of taste and smell, dizziness and so on. Nothing really worrying appeared. It lasted around 8-10 days.
In january, I got three scenes of sudden vertigo / dizziness with light heart palpitations or extra heartbeats. Those all happened during relaxed moment, playing PS5, sitting in my office, or going to sleep and drinking one last sip of water in kitchen. I called ambulance 2 times, both of those times they examined EKG, listened my heart, but everything was completely normal.
After that I got a rash called Pityriasis Rosea. I've never experienced rash, so that was really new to me. Same time I was feeling really fatiqued and "flu-like".
In the end of January one evening, I got a feeling of like my brains was going to explode, no pain, but just a one kind of a brain rush and feeling like my head was too full of thoughts. I got a really band anxiety attack at the same time. Fearing that I am going to lose my mind, and I was crying and holding my wifes hand. Like I dropped straight down to the very bottom of my mental health.
After that experience in one morning, maybe February, I noticed that the ball of my feet in my left side was having electric-current like feeling when I walked. That was on for 3-4 days, went off, came back again and went off, etc.. (Now it has almost stopped completely, I havent had it for weeks now.) Then I started to notice that my legs were buzzing and vibrating when I layed down at night to my bed. It was like there were soda water in my blood.
At that time I started having tightness in my throat, and urge to burp. The feeling fluctuated, was on and off, but sometimes it got really intense, like making me feel like I cant breathe. It lasted pretty much to september, but after that I havent got it.
One morning I was scared completely. I was having breakfast and tried to take a sip of water. I couldnt swallow. It just didnt work. It lasted about one minute, and after that I managed to drink the water but I needed to adjust my swallowing technique in order to manage to do that. After that for 1,5 months, everytime I swallowed someting sticky, like Protein-quark, I got heart palpitations followed by my swallow. I dont know now if those were really fasciculations in my throat/upper chest area.
That time I started to get numbness in my left side of upper lip. It was also on-off typed, lasted 5 months. Nowadays I dont get it anymore.
I started having electric-current like feelings in my body when I turned my head to left or right. I started noticing that the buzzing and vibrating started to become fasciculations all over my body.
In march/april, my left hand started to feel strange. It wasnt numb or really weak, but it started to feel a bit "off". Like it was empty. Soon after that, my left leg developed the same feeling. In the beginning those feelings would come and go in for week or two, but now it is permanent.
Then I desided to go for doctor. We made all the blood tests, ultrasound of heart, x-ray of my upper chest. Everything normal, except my thyroid levels were high, but they came back normal in one month without medication. Tested for celiac also, negative. After all the examines, doctor tested my reflexes and noted that all my reflexes were absent or really really low. Then he sent me to neurologist.
Neurologist tested reflexes, babinski, touch-my-nose, walking on my toes and basic stuff like that. All was good but reflexes absent.
We made brain MRI, and there were 10-14 non-spesific frontal white matter T2 hyperintensities found in my brain, and one 4mm long in T2 flair imaging subcortical. Neurologist said that those can be anything, from a strong infection, little vessel problems, or demyelination of nerves.
I was sent to CSF, and no signs of nerve inflammation were found ,and no signs of MS-disease.
I had ENMG, everything ok, but we didnt test bulbar. Distal latencies in left arm little bit long, but my hand were reeeaally cold so that might explain that.
My symptoms today:
- I am fatiqued. My muscles get tired really easily when doing tasks, like writing this text. Washing my hair in shower, my elbows get tired.
- I am having fasciculations in my throat, in my cheek, quads, calves, arch of the foot, abdominal, back, shoulders.. you name it. Sometimes those are more frequent, for example now I dont have them so much, but still every minute some part is twitching.
- My speech... this is the most worrying thing which is reminding me every second of this thing going on. My speech is slurred. It is hard for me to pronounce "R" (in finland the R is not similar than in english, it is more deeper vibrated) and other consonants especially when tired or slept bad. But even after good sleep, i slur my words. Speech is not the same it used to be. There is still moments (which are gettin rarer day by day) that my speech is pretty much normal.
-Swallowing. My swallowing is impaired too. I find it hard to swallow everything normally. Bread is getting stuck in my throat, I need to swallow 2-3 times to get it down. Water is going down yes, but often going to my nasal tunnels, and staying in the way of my airways. The feeling is like laying in dentist, and the nurse dont use the vacuum properly, and you have that pleghm in your throat. But now i got it when I sit and I cant swallow it away.
- Night/sleeping problems. I dont fall asleep because all the problems I have now in my body. I get those "hypnic jerks" every night I go to sleep. But nowadays those are diffenrent than they used to be. Now my jaw is shutting just before I fall asleep and it is waking me up. Every-***beep-time. It might happen 10-20 times before I actually can sleep.
-My fingers are getting really stiff when cold, or when in a room which has AC. My job is office job, and here is AC and my fingers are really really stiff and not functioning well.
- My toes are wiggling involuntarily, and so does my thumb. The muscle of thumb is twitchin and making the thumb to move.
- Symptoms are pretty much on the left side of my body. More twitching on that side too.
- Muscles in the side of my left leg is "wiggling" when I flex my foot. For example if I sit on sofa, and press my left foot to ground while my knee is in 90 degree angle, side muscles are moving like "northern lights" if you have ever seen those.
- I have postnasal drip continously nowadays. Lasted for 2 months. My soft palate is asymmetrical. When I say "AAA", it lifts, but it highest point moves little bit to right side.
-My cheek muscle on left side, which has had a lot of twitchinh, is dented. Even my wife noted me for it one day.
Lots of things, and lots of things I forgot to write, but anyways. I am really sad because all of this.
I know this is hard to read and to put together, but all I can think myself is ALS. With the other symptoms I could lie to myself, and convince myself that I have some kinf of Long-Covid thing going on, but the speech problems are making me forget about lying to myself.
I am 28 years old man from Finland. Father to 0,3 and 5 years old kids, and husband to my beloved wife.
In advance I want to say how sorry I feel for you everyone, especially you with diagnosed MNDs and to those who are taking care of ones. You are in my heart nowadays every moment. I dont want to be understood wrong, neither I dont want to argue with anyone. If I say something that is hurting someone, tell me, I dont know how to talk about this. My english isnt so good either, so that is making this even more difficult.
My symptoms has started with progressive general fatique over 2 years. I've complained about it to my wife now and then. Still, it hasnt bothered me too much to not to be able to do my job or any other tasks. It has just been kinda like a feeling that I am getting a flu, but it never came.
In december 2021 I got covid-19. My symptoms were little fever, cough, sore throat, loss of taste and smell, dizziness and so on. Nothing really worrying appeared. It lasted around 8-10 days.
In january, I got three scenes of sudden vertigo / dizziness with light heart palpitations or extra heartbeats. Those all happened during relaxed moment, playing PS5, sitting in my office, or going to sleep and drinking one last sip of water in kitchen. I called ambulance 2 times, both of those times they examined EKG, listened my heart, but everything was completely normal.
After that I got a rash called Pityriasis Rosea. I've never experienced rash, so that was really new to me. Same time I was feeling really fatiqued and "flu-like".
In the end of January one evening, I got a feeling of like my brains was going to explode, no pain, but just a one kind of a brain rush and feeling like my head was too full of thoughts. I got a really band anxiety attack at the same time. Fearing that I am going to lose my mind, and I was crying and holding my wifes hand. Like I dropped straight down to the very bottom of my mental health.
After that experience in one morning, maybe February, I noticed that the ball of my feet in my left side was having electric-current like feeling when I walked. That was on for 3-4 days, went off, came back again and went off, etc.. (Now it has almost stopped completely, I havent had it for weeks now.) Then I started to notice that my legs were buzzing and vibrating when I layed down at night to my bed. It was like there were soda water in my blood.
At that time I started having tightness in my throat, and urge to burp. The feeling fluctuated, was on and off, but sometimes it got really intense, like making me feel like I cant breathe. It lasted pretty much to september, but after that I havent got it.
One morning I was scared completely. I was having breakfast and tried to take a sip of water. I couldnt swallow. It just didnt work. It lasted about one minute, and after that I managed to drink the water but I needed to adjust my swallowing technique in order to manage to do that. After that for 1,5 months, everytime I swallowed someting sticky, like Protein-quark, I got heart palpitations followed by my swallow. I dont know now if those were really fasciculations in my throat/upper chest area.
That time I started to get numbness in my left side of upper lip. It was also on-off typed, lasted 5 months. Nowadays I dont get it anymore.
I started having electric-current like feelings in my body when I turned my head to left or right. I started noticing that the buzzing and vibrating started to become fasciculations all over my body.
In march/april, my left hand started to feel strange. It wasnt numb or really weak, but it started to feel a bit "off". Like it was empty. Soon after that, my left leg developed the same feeling. In the beginning those feelings would come and go in for week or two, but now it is permanent.
Then I desided to go for doctor. We made all the blood tests, ultrasound of heart, x-ray of my upper chest. Everything normal, except my thyroid levels were high, but they came back normal in one month without medication. Tested for celiac also, negative. After all the examines, doctor tested my reflexes and noted that all my reflexes were absent or really really low. Then he sent me to neurologist.
Neurologist tested reflexes, babinski, touch-my-nose, walking on my toes and basic stuff like that. All was good but reflexes absent.
We made brain MRI, and there were 10-14 non-spesific frontal white matter T2 hyperintensities found in my brain, and one 4mm long in T2 flair imaging subcortical. Neurologist said that those can be anything, from a strong infection, little vessel problems, or demyelination of nerves.
I was sent to CSF, and no signs of nerve inflammation were found ,and no signs of MS-disease.
I had ENMG, everything ok, but we didnt test bulbar. Distal latencies in left arm little bit long, but my hand were reeeaally cold so that might explain that.
My symptoms today:
- I am fatiqued. My muscles get tired really easily when doing tasks, like writing this text. Washing my hair in shower, my elbows get tired.
- I am having fasciculations in my throat, in my cheek, quads, calves, arch of the foot, abdominal, back, shoulders.. you name it. Sometimes those are more frequent, for example now I dont have them so much, but still every minute some part is twitching.
- My speech... this is the most worrying thing which is reminding me every second of this thing going on. My speech is slurred. It is hard for me to pronounce "R" (in finland the R is not similar than in english, it is more deeper vibrated) and other consonants especially when tired or slept bad. But even after good sleep, i slur my words. Speech is not the same it used to be. There is still moments (which are gettin rarer day by day) that my speech is pretty much normal.
-Swallowing. My swallowing is impaired too. I find it hard to swallow everything normally. Bread is getting stuck in my throat, I need to swallow 2-3 times to get it down. Water is going down yes, but often going to my nasal tunnels, and staying in the way of my airways. The feeling is like laying in dentist, and the nurse dont use the vacuum properly, and you have that pleghm in your throat. But now i got it when I sit and I cant swallow it away.
- Night/sleeping problems. I dont fall asleep because all the problems I have now in my body. I get those "hypnic jerks" every night I go to sleep. But nowadays those are diffenrent than they used to be. Now my jaw is shutting just before I fall asleep and it is waking me up. Every-***beep-time. It might happen 10-20 times before I actually can sleep.
-My fingers are getting really stiff when cold, or when in a room which has AC. My job is office job, and here is AC and my fingers are really really stiff and not functioning well.
- My toes are wiggling involuntarily, and so does my thumb. The muscle of thumb is twitchin and making the thumb to move.
- Symptoms are pretty much on the left side of my body. More twitching on that side too.
- Muscles in the side of my left leg is "wiggling" when I flex my foot. For example if I sit on sofa, and press my left foot to ground while my knee is in 90 degree angle, side muscles are moving like "northern lights" if you have ever seen those.
- I have postnasal drip continously nowadays. Lasted for 2 months. My soft palate is asymmetrical. When I say "AAA", it lifts, but it highest point moves little bit to right side.
-My cheek muscle on left side, which has had a lot of twitchinh, is dented. Even my wife noted me for it one day.
Lots of things, and lots of things I forgot to write, but anyways. I am really sad because all of this.
I know this is hard to read and to put together, but all I can think myself is ALS. With the other symptoms I could lie to myself, and convince myself that I have some kinf of Long-Covid thing going on, but the speech problems are making me forget about lying to myself.