Pebble
New member
- Joined
- Jan 2, 2019
- Messages
- 4
- Reason
- Learn about ALS
- Country
- UK
- State
- Merseyside
- City
- Liverpool
Hi everyone and thanks for taking the time to read my post. I am currently crippled by the fear that my worsening symptoms suggest ALS. For a time I put them down to anxiety but I can no longer accept that explanation as everything just seems too coincidental.
It all started in August- I slipped in the bath and whacked my head on the side of the sink. Got up then my vision started to black out and I felt suddenly overwhelmed by weakness and nausea so my boyfriend called an ambulance. The feeling passed and they did the usual tests for head injury and then let me go. 48 hours later my eyelid on the side of the injury started intermittently twitching violently, but I dismissed this (thought maybe something to do with nerve damage in the area).
Fast forward a few weeks and I developed a wheezing feeling while breathing and my voice became croaky and hoarse. I didn’t connect this to anything else at the time. I went to the doctor who claimed he couldn’t hear any wheeze and so I left it. This was in October and it is now January and the wheeze and hoarseness of my voice is still the same.
I did have a comprehensive blood test done at the end of October and findings were unremarkable EXCEPT slightly low blood creatinine. The doctor said this was probably because I’m “lean” and didn’t seem concerned, although he did say it’s mostly seen in the elderly. This is alarming since I am a 23 year old female, but at the time I had no other symptoms to suggest anything was wrong and didn’t for one second link it to the wheezing/hoarse voice, but due to the symptoms that developed soon after, I am now incredibly fearful of this finding.
Most worryingly, in November I started to notice my muscles would jerk slightly/twitch at random when I was lying in bed. I found it quite disturbing but thought I might just be anxious. Then I noticed an onset of fasciculations throughout the day in various areas- my legs were the most obvious place, but also face, arms, torso, almost everywhere.
The fasciculations don’t stop when I’m moving/using the muscles, which I have read is the case with BFS, which is why I am particularly frightened. The twitches are so frequent now that sometimes I just sit and feel my entire calves sort of ‘bubbling’ everywhere.
I tried to convince myself this was stress-related, but then my calves started to cramp up regularly and feel stiff, both at rest and when moving, at some points to agonising levels. The cramps aren’t associated with any particular time of day. A few days after this the arches of my feet started to cramp, as well as my hands while holding my phone or any small level of exertion.
I also wake up in the mornings with these hand and foot cramps and sometimes a slight muscle jerk will wake me up. Because these things are happening in my sleep I don’t believe they are psychosomatic. In recent weeks my hands have also developed a tremor and my fingers tremble all the time.
As if this wasn’t enough, I now have twitches/vibrations in my tongue and a jumpy feeling in my throat as if those muscles are also twitching now. I feel aware of my tongue as if it’s in the way when I’m speaking and I’m struggling to form certain words as effortlessly as I used to. Like my tongue is not as ‘cooperative’ /speech just doesn’t feel as natural.
Given the rapid onslaught of all these terrifying symptoms I’ve reached one conclusion. It all seems to have happened so quickly. When it was just muscle twitches I told myself it was anxiety but then the cramps and tremor started and I could no longer believe it was in my mind. The creatinine blood test result is also always lurking in the back of my mind.
I believe the onset of symptoms following my head injury seems weirdly coincidental and I just worry that was the trigger. The other thing that I keep thinking is that I had an acute exposure to toxic chemicals when I was 19- my housemate at uni left a plastic knife on the hob on the highest heat setting then went out so it was left burning and producing black toxic fumes for at least an hour. I went into the flat (not knowing it was plastic that was burning) and went right in there, switched off the heat and removed the knife. I have no idea why the smoke alarm didn’t go off because it was very thick smoke.
I came out with eyes streaming, a scratchy throat and the fumes just smelt so toxic. I wouldn’t have gone in if I’d known it was plastic burning and I keep looking back on this experience with so much regret and wishing I’d stayed well away and called security to sort it. I have read research to suggest exposure to chemicals is an environmental trigger of ALS which is why I have made this connection.
Anyway, I’m just posting because this is driving me to despair and all I can think is that certain environmental triggers have given me this illness at such a young age and that I’m that unlucky person who gets it at this age. I know no one here can fix this but I felt like I had to get all of this off my chest somewhere as I won’t be able to see a neurologist/specialist for a while due to long waiting lists so this was the only place I could turn. I am also terrified to see a neurologist in all honesty. I am only 23 years old and this experience is overwhelming me to the point that I am in a pit of depression and can’t live a normal life.
Thanks to anyone who reads this/responds and for understanding the level of distress these symptoms can cause.
It all started in August- I slipped in the bath and whacked my head on the side of the sink. Got up then my vision started to black out and I felt suddenly overwhelmed by weakness and nausea so my boyfriend called an ambulance. The feeling passed and they did the usual tests for head injury and then let me go. 48 hours later my eyelid on the side of the injury started intermittently twitching violently, but I dismissed this (thought maybe something to do with nerve damage in the area).
Fast forward a few weeks and I developed a wheezing feeling while breathing and my voice became croaky and hoarse. I didn’t connect this to anything else at the time. I went to the doctor who claimed he couldn’t hear any wheeze and so I left it. This was in October and it is now January and the wheeze and hoarseness of my voice is still the same.
I did have a comprehensive blood test done at the end of October and findings were unremarkable EXCEPT slightly low blood creatinine. The doctor said this was probably because I’m “lean” and didn’t seem concerned, although he did say it’s mostly seen in the elderly. This is alarming since I am a 23 year old female, but at the time I had no other symptoms to suggest anything was wrong and didn’t for one second link it to the wheezing/hoarse voice, but due to the symptoms that developed soon after, I am now incredibly fearful of this finding.
Most worryingly, in November I started to notice my muscles would jerk slightly/twitch at random when I was lying in bed. I found it quite disturbing but thought I might just be anxious. Then I noticed an onset of fasciculations throughout the day in various areas- my legs were the most obvious place, but also face, arms, torso, almost everywhere.
The fasciculations don’t stop when I’m moving/using the muscles, which I have read is the case with BFS, which is why I am particularly frightened. The twitches are so frequent now that sometimes I just sit and feel my entire calves sort of ‘bubbling’ everywhere.
I tried to convince myself this was stress-related, but then my calves started to cramp up regularly and feel stiff, both at rest and when moving, at some points to agonising levels. The cramps aren’t associated with any particular time of day. A few days after this the arches of my feet started to cramp, as well as my hands while holding my phone or any small level of exertion.
I also wake up in the mornings with these hand and foot cramps and sometimes a slight muscle jerk will wake me up. Because these things are happening in my sleep I don’t believe they are psychosomatic. In recent weeks my hands have also developed a tremor and my fingers tremble all the time.
As if this wasn’t enough, I now have twitches/vibrations in my tongue and a jumpy feeling in my throat as if those muscles are also twitching now. I feel aware of my tongue as if it’s in the way when I’m speaking and I’m struggling to form certain words as effortlessly as I used to. Like my tongue is not as ‘cooperative’ /speech just doesn’t feel as natural.
Given the rapid onslaught of all these terrifying symptoms I’ve reached one conclusion. It all seems to have happened so quickly. When it was just muscle twitches I told myself it was anxiety but then the cramps and tremor started and I could no longer believe it was in my mind. The creatinine blood test result is also always lurking in the back of my mind.
I believe the onset of symptoms following my head injury seems weirdly coincidental and I just worry that was the trigger. The other thing that I keep thinking is that I had an acute exposure to toxic chemicals when I was 19- my housemate at uni left a plastic knife on the hob on the highest heat setting then went out so it was left burning and producing black toxic fumes for at least an hour. I went into the flat (not knowing it was plastic that was burning) and went right in there, switched off the heat and removed the knife. I have no idea why the smoke alarm didn’t go off because it was very thick smoke.
I came out with eyes streaming, a scratchy throat and the fumes just smelt so toxic. I wouldn’t have gone in if I’d known it was plastic burning and I keep looking back on this experience with so much regret and wishing I’d stayed well away and called security to sort it. I have read research to suggest exposure to chemicals is an environmental trigger of ALS which is why I have made this connection.
Anyway, I’m just posting because this is driving me to despair and all I can think is that certain environmental triggers have given me this illness at such a young age and that I’m that unlucky person who gets it at this age. I know no one here can fix this but I felt like I had to get all of this off my chest somewhere as I won’t be able to see a neurologist/specialist for a while due to long waiting lists so this was the only place I could turn. I am also terrified to see a neurologist in all honesty. I am only 23 years old and this experience is overwhelming me to the point that I am in a pit of depression and can’t live a normal life.
Thanks to anyone who reads this/responds and for understanding the level of distress these symptoms can cause.
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