Buzzoven
New member
- Joined
- Aug 8, 2024
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- RU
- City
- Moscow
Good day, everyone!
I'm a 33 years old male, never smoked, haven't drunk alcohol, have always been physically active (ski, mountain bike, callisthenics almost every day). Had never had any health issues until recently. Here is my short chronology of how it went:
The year is 2024, end of March. A train ride to the mountain part of my country where my mother lives. I stayed at her place, my goal was to have some healthy diet away from the city where I used to visit junkfood places every day and to normalise my sleep (used to stay awake up until 4 in the morning). No burger king joints and no video game console in that area, just my apple laptop for work and whole groceries.
In April and May almost every day I had a 10-15km bicycle ride through the mountains, lots of pedalling uphill, I rode to the nearest resort where I swum in their swimming pool for about an hour, breaststroke only. During one of these swims I noticed that there was something off with my right leg. Just a mild unpleasant feel in the knee area each time I pushed it through the water 20 minutes into the swim.
Also, one morning in May I woke up and with one of my first steps I felt a painful sensation in my right ankle joint, actually somewhere above the joint, like a pinched nerve, but it went away in a couple of days.
I was very physically active during these two months and lost almost 9 kilos of fat. And when I showed a few photos to my friend he said that I looked like an ancient greek god, lol. Well, I think it truly was my peak form aesthetically wise during my lifetime, a defined 6-pack, lean muscular hands and etc.
In June came a heatwave and I hardly went away. Spent this month lying in bed with a laptop, almost no physical activity. But it was a stressful month for me. My company laid me off out of the blue at the end of May. So I was looking for a new job for the whole month, had dozens of interviews and eventually got a few offers.
July first, a train ride back to the city to have some paperwork done for my new company. That was the day when the nightmare started. I woke up with a twitch in my right leg under the knee in the calf area. It was twitching just a couple of times per minute but yet it felt rather unpleasant and somehow menacing, I immediately knew something very bad was going to happen or perhaps was already happening.
The twitching never stopped. I couldn't lie in bed with my laptop and watch YouTube or movies no more nor have cozy short daytime sleeps. The only time when I wasn't feeling that twitching was when I walked. So I walked a lot every day. I couldn't sleep long anymore. I would come home after 30 thousand steps and manage to go to sleep by being completely exhausted and then would wake up early in the morning because of the twitching and be back on my feet walking somewhere just to walk away from those twitches.
And I was so afraid that I didn't even dare to google what could it possibly be because somehow I already knew it is something terrible.
August. I took a train back to my mother's place in the mountains. Now both my legs were twitching. It looked as if someone was poking them with an invisible finger every second randomly but mostly in the calf area under the knee down until the hill. And it slowly spread above the knees.
On night I woke up in some kind of a panic attack and immediately stood up but instead of walking I collapsed on my knees because there was no strength in my legs for a couple of minutes.
I was so afraid that I asked my friend to google my symptoms for me, well you probably guessed what he had found. He also described my symptoms to his friend whose mother was a neurologist and she said she once gave a MND diagnosis to a young man based on the same symptoms. Well, I thought that if the possibilities are already that bad then I might as well google it myself because I probably won't find anything worse than it.
So I started reading about ALS. I learned about Lou Gehrig and looked up for other famous young people with ALS, most of them football or rugby players in theirs late 20s and early 30s. Read about their early symptoms which turned out to be just some twitching in limbs just like mine. Then I found this site. I read all the topics from "newly diagnosed" forum which also had many young men in their 20s and 30s and about first 100 pages of threads from "could it be ALS".
Last week one day I woke up with numbness in my left arm fingers. Then after some hours my left forearm started to twitch along with my middle finger going up and down to the palm involuntarily for a couple of minutes almost all it's range of motion. It eventually stopped and my fingers were no longer numb but it scared me a lot.
Last night when I was lying on my right side trying to sleep my shoulder deltoid I was lying on started to twitch like a machine gun for a minute or so until I changed my position.
How I twitch now - calves on both legs, almost every second. Sometimes there is a more powerful jerk in muscles above the knee, sometimes a short burst of fasciculations in my thighs, sometimes a jerk in buttocks, sometimes a jerk or a couple of jerks along my spine, a jerk in arms, a small series of fasciculations in my deltoids. And they never stop. I would stare at my calves for hours almost hypnotised by it hoping that it would stop but it would not.
I just know it's not BFS. The way it progresses aligns with the progress of those who was diagnosed. It slowly creeps up my legs and the fasciculations slowly get more frequent and more unpleasant to feel. When I walk I feel there is something slightly off already with my legs, like I have a little less control over them. And It gets harder for me to clench my fingers into a fist.
I also did a lot of blood tests and everything was exceptionally good - my hormones, my b12, vitamin D, no hiv or any other virus and etc.
So the only thing left to do is to go and get my ALS officially acknowledged with EMG. But I'm so scared of doctors, it's like my number one phobia. And after that, what would I tell my parents? I feel like this is the end, a nightmare I would never wake up from apart from going to the real hell after dying pretty soon where the suffering would be ramped up ten times
I'm a 33 years old male, never smoked, haven't drunk alcohol, have always been physically active (ski, mountain bike, callisthenics almost every day). Had never had any health issues until recently. Here is my short chronology of how it went:
The year is 2024, end of March. A train ride to the mountain part of my country where my mother lives. I stayed at her place, my goal was to have some healthy diet away from the city where I used to visit junkfood places every day and to normalise my sleep (used to stay awake up until 4 in the morning). No burger king joints and no video game console in that area, just my apple laptop for work and whole groceries.
In April and May almost every day I had a 10-15km bicycle ride through the mountains, lots of pedalling uphill, I rode to the nearest resort where I swum in their swimming pool for about an hour, breaststroke only. During one of these swims I noticed that there was something off with my right leg. Just a mild unpleasant feel in the knee area each time I pushed it through the water 20 minutes into the swim.
Also, one morning in May I woke up and with one of my first steps I felt a painful sensation in my right ankle joint, actually somewhere above the joint, like a pinched nerve, but it went away in a couple of days.
I was very physically active during these two months and lost almost 9 kilos of fat. And when I showed a few photos to my friend he said that I looked like an ancient greek god, lol. Well, I think it truly was my peak form aesthetically wise during my lifetime, a defined 6-pack, lean muscular hands and etc.
In June came a heatwave and I hardly went away. Spent this month lying in bed with a laptop, almost no physical activity. But it was a stressful month for me. My company laid me off out of the blue at the end of May. So I was looking for a new job for the whole month, had dozens of interviews and eventually got a few offers.
July first, a train ride back to the city to have some paperwork done for my new company. That was the day when the nightmare started. I woke up with a twitch in my right leg under the knee in the calf area. It was twitching just a couple of times per minute but yet it felt rather unpleasant and somehow menacing, I immediately knew something very bad was going to happen or perhaps was already happening.
The twitching never stopped. I couldn't lie in bed with my laptop and watch YouTube or movies no more nor have cozy short daytime sleeps. The only time when I wasn't feeling that twitching was when I walked. So I walked a lot every day. I couldn't sleep long anymore. I would come home after 30 thousand steps and manage to go to sleep by being completely exhausted and then would wake up early in the morning because of the twitching and be back on my feet walking somewhere just to walk away from those twitches.
And I was so afraid that I didn't even dare to google what could it possibly be because somehow I already knew it is something terrible.
August. I took a train back to my mother's place in the mountains. Now both my legs were twitching. It looked as if someone was poking them with an invisible finger every second randomly but mostly in the calf area under the knee down until the hill. And it slowly spread above the knees.
On night I woke up in some kind of a panic attack and immediately stood up but instead of walking I collapsed on my knees because there was no strength in my legs for a couple of minutes.
I was so afraid that I asked my friend to google my symptoms for me, well you probably guessed what he had found. He also described my symptoms to his friend whose mother was a neurologist and she said she once gave a MND diagnosis to a young man based on the same symptoms. Well, I thought that if the possibilities are already that bad then I might as well google it myself because I probably won't find anything worse than it.
So I started reading about ALS. I learned about Lou Gehrig and looked up for other famous young people with ALS, most of them football or rugby players in theirs late 20s and early 30s. Read about their early symptoms which turned out to be just some twitching in limbs just like mine. Then I found this site. I read all the topics from "newly diagnosed" forum which also had many young men in their 20s and 30s and about first 100 pages of threads from "could it be ALS".
Last week one day I woke up with numbness in my left arm fingers. Then after some hours my left forearm started to twitch along with my middle finger going up and down to the palm involuntarily for a couple of minutes almost all it's range of motion. It eventually stopped and my fingers were no longer numb but it scared me a lot.
Last night when I was lying on my right side trying to sleep my shoulder deltoid I was lying on started to twitch like a machine gun for a minute or so until I changed my position.
How I twitch now - calves on both legs, almost every second. Sometimes there is a more powerful jerk in muscles above the knee, sometimes a short burst of fasciculations in my thighs, sometimes a jerk in buttocks, sometimes a jerk or a couple of jerks along my spine, a jerk in arms, a small series of fasciculations in my deltoids. And they never stop. I would stare at my calves for hours almost hypnotised by it hoping that it would stop but it would not.
I just know it's not BFS. The way it progresses aligns with the progress of those who was diagnosed. It slowly creeps up my legs and the fasciculations slowly get more frequent and more unpleasant to feel. When I walk I feel there is something slightly off already with my legs, like I have a little less control over them. And It gets harder for me to clench my fingers into a fist.
I also did a lot of blood tests and everything was exceptionally good - my hormones, my b12, vitamin D, no hiv or any other virus and etc.
So the only thing left to do is to go and get my ALS officially acknowledged with EMG. But I'm so scared of doctors, it's like my number one phobia. And after that, what would I tell my parents? I feel like this is the end, a nightmare I would never wake up from apart from going to the real hell after dying pretty soon where the suffering would be ramped up ten times
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