30 Year old father of 3 Scared of als

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Hello, Im Rodney And Im Telling You My story for your opinion So 4 Months and 18 days ago I noticed a twitch in my facial area and since im a hypochrondiac i went to Dr google and i was told this was a symptom of ALS which i knew was a terminal illness i went to the ER immediatly And asked is this ms or als they told me thats not even in my ball park and sent me home 2 weeks later i started twitching 24/7 in the calves and freaked out and thought i was dying of a terminal illness. One by One the twitching spread entirely through my body as i was becoming more anxious i went to a neuro who jumped straight to emg with no clinical it came back clean which reassured me then i read the "exceptions" and get extremly scared my wife and oldest son google for my reassurence my neuro after my emg said it could be 2 things Benign Fasciculation Syndrome (which im familiar with now) Or Neuromyotonia Which could be caused by Cancer which im also a bit scared of. I went to the neuro to get a clinical i read it was very important it came back good no strength loss or atrophy normal reflexs. my neuro sceduled a second emg on march 6 2019 his first emg was november 6th. im also scared about mispronouncing words

, trouble swallowing (only sometimes) excess mucus when i eat dairy and thats about it i now have twitching in my calves,arches of feet abs arms thumb tongue and preety much everywhere else if you could tell me if this sounds like anything to you guys thank you for any responses

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2 Replies

  • Posted

    Hi Rodney!

    First off please try your best not to be afraid, which is really easy to say I know but it will only make your symptoms worse if your really anxious. I started with a eye twitch too, I first just put it down to a lot of screen time as I worked in a office, then it spread to my mouth, arms stomach and legs which also went numb and tingly. My mam has MS so my GP was rather concerned and it turned out I do in fact have a brain lesion, again my neuro is still pretty confident that due to its location its not MS. So for me they have put Rippling muscles disease on the table or possibly Cramp Faciculation Syndrome and pretty much left me to it. ALS is the scary prospect to anyone who experiences extensive muscle twitching Ive been there too. With ALS individuals tend to report experiencing muscle weakness before and the twitching tends to be reported after so please try not to be afraid. Even with my family history and a brain lesion its likely I do not or will not have MS. What Im trying to say is you are not alone and there are many many things that can make us twitchy folk twitch. Im 30 now and my symptoms first appeared at 23(ish). I still twitch every single day which is annoying but Im very much so alive and getting on with things. Its been many years for me with still no real solid answers but a butt load of tests, so sadly you may be waiting a while to know why your twitching but try not to let Dr Google frighten you! 😃

    • Posted

      Try not to worry Rodney -- I've seen a few people on this forum who have unusal symptoms and immediately become very scared of ALS. However on Wikipedia it says about ALS, 'In Europe, the disease affects about two to three people per 100,000 per year'... if you get worried as was said it brings on anxiety, which can itself cause all sorts of scary symptoms, and you get into a bad cycle.

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