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Pebble

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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.
 
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lgelb

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Low creatinine can relate to many things, such as diet, or nothing at all, and can be followed by your GP/followed on with other blood tests if/as needed. It just doesn't trump the non-specific nature of your symptoms, nor point to MND.

Your issues don't point to MND, either. And you don't "get" MND from one whack on the head or breathing plastic for a couple of minutes.

Want to feel less despair? See a neurologist.

Best,
Laurie
 

Bestfriends14

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Pebble,

Your symptoms are not one tiny bit how ALS starts. How did you ever get the idea that your symptoms were in anyway related to ALS? It's obviously caused you a lot of stress, but here's one thing I can tell you for sure: your symptoms are not related to ALS so you can put that worry out of your mind for good. Not sure what's going on, but it ain't ALS.

Good luck to you and take good care.
 

Pebble

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I also forgot to mention that I am constantly clearing my throat alongside the hoarse voice and have post nasal drip. As well as this I feel like multiple muscles in my body will “twitch/flinch” at the smallest movements or when at rest, as if reacting to something. Or I’ll slightly move part of my body and instead it does a big jerk that feels out of my control. Is this a sign of hyperreflexia?
 

Pebble

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Thank you for the responses, but my understanding is that ALS can present very differently in different people. I worry it could be bulbar onset or onset in multiple regions (I have read this is possible). Also the fasciculations haven’t stopped for a month or more now (daily without fail) and are increasing in severity and frequency, especially the past week. Certain fasciculations actually cause me pain and the muscles seem fatigued from the constant twitching (and cramps). I guess the trouble is that I can’t think what else this could point to, especially because the fasciculations continue whether I’m at rest, walking, flexing etc? Why would this be if the fasciculations are not pathological?

I also notice what I can only describe as a lump of muscle on the front region of my right thigh. It feels like it should be one long muscle spanning the length of the thigh but instead it has shortened so that it feels like a ‘bump’ of muscle sticking out when I run my hand down my thigh (it’s more or less central at the front of the thigh and quite high up, not near the knee). This specific area of muscle feels quite tender as well...
It is something I only recently noticed so isn’t a natural anatomical asymmetry. This is present on the leg that I find I have much more severe cramps as well so I’m not sure what this indicates.
I’ve felt several friends’ legs, my boyfriends, my mums etc. and no one has the same bump of muscle where I have it, everyone else’s thigh muscle feels smooth and even. I don’t know if the muscle could have wasted and left this part that juts out in this unusual way.
 

lgelb

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So we tell you we don't see ALS, and you inform us that your reading says differently. Each of us would be happy only to have read about ALS, I assure you.

If fascics and muscle bumps were always pathological, though, there would be a lot more ALS cases out there, don't you think? They would be hard to hide, too.

After the neuro assures you, assuming you get there at some point, if you are still worried albeit with a clean bill of health, I'd suggest a counselor as your next port of call.

All the best.
 
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