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MND/ALS Fears - 2 Years Twitching - Now Bulbar Symptoms

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cw93939
cw93939

In June 2017 I suddenly started getting muscle twitches all over my body. This came out of the blue. They were largely in my legs and calves but also random throughout my body, particularly after movements like coughing or sneezing. I had also experienced back and leg pain, with my legs feeling fatigued, so I connected the two via Googling and came up with limb onset ALS. After 3 attempts I persuaded my GP to refer me to a neurologist, who examined me 3 months into twitching and said it was BFS. I insisted on an EMG to check, and 4 months into twitching I had an EMG of various muscles in both legs and one arm/ hand. Apart from picking up a couple of fasciculations in a calf, the EMG was deemed clean and confirmed as BFS. My back and leg problems resolved after separate treatment for what had turned out to be a badly herniated lumbar disc.

Although it still took another few months to finally put the whole thing behind me and start to reduce the nagging doubts, I did eventually get back to normal and the twitches became a lot less noticeable when I didn't think about them. This all changed 2 weeks ago when I started feeling a tight neck and throat. The first few days I ignored it but then I connected it with twitching and remembered the bulbar ALS form that I hadn't previously considered. I now wish my EMG had included bulbar muscles, but it didn't. As well as the twitches I now have:

  • Tight feeling throat, especially when swallowing saliva after not swallowing for a while
  • Clicking and crackling type sounds coming from within my throat sometimes
  • Food and drink goes down fine without choking but often feel the need for an extra swallow or clearing throat after drinking
  • Often, if I stop thinking about swallowing, I get this kind of sudden realisation I need to swallow and it seems to be delayed and hard work to actually swallow. I know this sounds like anxiety but it once happened during sleep when surely I wasn't worrying about it.
  • The feeling of extra saliva in my mouth and a cool feeling at the back of my throat
  • My tongue when stuck out moves around a lot. If I keep it rested in my mouth I can't really see any twitches though.
  • I'm not slurring words but on a few recent occasions have got tongue tied

I'm trying not to think the worst and admit it would be a rare onset but I have read several cases where extra phlegm and other minor issues preceded an eventual ALS diagnosis. I'm mid 30s and have a young family and that is what eats me up the most in all of this. Can anyone relate?

0 likes, 2 replies

2 Replies

  • dawn68509
    dawn68509 cw93939

    Posted

    your symptoms do not sound like als , als never gets better once symptoms appear it does not change once you arent thinking about it as much it keeps going and going getting worse with no break , your symptoms sound stress related to me ,if you use google for symptoms you will always get the worst case scenario ,if youve had a clean emg whilst you were deep in symptoms id say this is definitely not als in my opinion

  • mikew85
    mikew85 cw93939

    Posted

    Hi CW, just discovered this thread and my experience over the last few months has been very similar to what you were experiencing from 2017 until your post. Basically, I've experienced a gamut of symptoms, but most prominently and consistently muscle twitches all around my body (though not tongue to date), and now most recently a number of the strange saliva/swallowing/mouth issues that you describe above. Even in a typical day, the mouth symptoms come and go, and other days don't appear at all--and clearly seem worse when I am conscious of my swallowing and amount of saliva in my mouth.

    All that said, between the muscle twitching, the weakness that I thought I was feeling in my limbs (which recently has almost completely vanished), and now the mouth symptoms, I've been concerned about worst case scenarios, but also recognize at least some of this could be explained by anxiety and/or running and working out more lately to make sure I'm not losing any strength and/or medications and supplements I've been taking. I'm planning on biting the bullet and trying to set something up with a neurologist soon, but am wondering how everything has gone for you since you wrote the message above? Well, I hope.

    Take care,

    Mike

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