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Thread: Diagnosed with BFS, now I'm unsure. (Leg, Hand, Speech "Symptoms")

  1. #1

    Diagnosed with BFS, now I'm unsure. (Leg, Hand, Speech "Symptoms")

    Hi everyone,

    Approximately 1.5 years ago I was diagnosed with BFS, after a few months of twitching and perceived weakness in both my hands, legs, and tongue. It was written off as anxiety-related after ~7 doctors visits, including the whole workup from GP -> neurologist -> neuromuscular specialist (I even got a second opinion from an ALS clinic directly), and then a couple visits to psychiatrists that diagnosed me with HA and gave me SSRIs. I went about my life attempting to cope, and did fairly well up until a few months ago when some new weird issues started happening to me that gave me cause for concern again.

    This whole episode began with a seemingly uncontrollable twitch in my index finger that was associated with some minor weakness. Weirdly enough, I was actually able to start eliciting twitching on this finger by cracking the knuckle on it. I was having more difficulty opening caps, turning keys, etc. with this hand in particular. This rang some immediate alarms in my head but I decided to wait and see if it would pass. While I was waiting for this to pass, I started experiencing weakness in my left foot again, while walking. It seemed like my ankle was very stiff, and I was experiencing arch pain pretty much after 100m of walking on a consistent basis. The walk from the train station to where I work became painful after some time, and this hasn't really gone away. Now the twitches are body-wide again, and I'm beginning to get worried.

    For the last month now, I have been experiencing speech issues. I'm not sure if these are truly perceived or not, since nobody says I sound any different, but I can feel a subtle lack of coordination in my tongue and lips. This has led me to chewing on my tongue and cheeks mid-sentence, and mid-meal. I can do all the typical things a neuro would look for when checking my tongue out, such as sticking it out, moving it side to side, but I have some odd difficulty moving it in circles.

    Edit: I forgot to mention that I have been having some dry tongue alongside these other symptoms. I have tried to keep myself hydrated to fix this but nothing has really worked.

    Finally, the most recent 'symptom' I've experienced on top of all of this is a dull headache and shortened sleep cycle for roughly a week now. I'll feel like I'm in a daze when I wake up, which gets better as I sit up and go about my day. I can't seem to sleep more than 5 or 6 hours at a time, no matter if I'm laying on my back, sides, or stomach. I've learned that this could potentially be breathing issues during sleep. I have a suspicion that this could somehow be GERD related, as I have also experienced burning in my chest when sitting up in bed and lying down.

    Frankly, I'm self-aware enough to know that this could all be anxiety related, but I can't seem to shake the feeling of what it might be if it's not. I'm posting this to (hopefully) get some advice, see if anyone else has experienced anything similar to this, and hopefully gain some relief. I've posted on alsforums.com and have a thread there, but I don't want to continue to bother people that are actually dying, if I myself am not.
    Last edited by collapsed; 02-06-19 at 02:57.

  2. #2
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    Re: Diagnosed with BFS, now I'm unsure. (Leg, Hand, Speech "Symptoms")

    I view speaking as one of the automatic functions (like breathing) which once you start thinking about and focusing on can feel unnatural and difficult. With the brain being the most powerful thing known to man, it can cause all sorts of stumbling, mumbling and difficulties when the anxious mind starts trying to 'manage' the super complex movements required in speech. The key is distraction and forgetting about it (easier said than done)!I have had the very speech concerns you talk of in my distant past, you think you sound different, it feels hard to form words and the more you focus on it, the worse it gets. You have had benign fasciculation syndrome for a year and a half and if it had been ALS starting a year and a half ago you wouldn't 'just' be getting to some speech issues, it would have happened some time ago. I would definitely put this down to being anxious, as you also talk about not sleeping, dry mouth and headache - all things that happen when people have far too much adrenaline coursing round their body. I honestly don't think you should have a thread on an ALS forum, they aren't there for people who want to 'see if they have it' they are there for people who have been diagnosed.

  3. #3

    Re: Diagnosed with BFS, now I'm unsure. (Leg, Hand, Speech "Symptoms")

    You aren't the only one. Been dealing with twitching for over 6 years now. At times it drives me nuts. I've had all sorts of tests done and nothing...... It's just a heightened awareness and anxiety.

    A friend of mine was diagnosed with ALS and your symptoms just don't line up. It's not perceived weakness but actual weakness. Like they can't move. And the twitching isn't a major issue until the weakness sets in. Usually with ALS its in one area and grows from there. I still worry about it but at this point its been happening for so long I just have accepted it. Also, if you've been twitching for 1 1/2 years like me it would of set in by now.

    Basically you and me are in the same boat. Some type of anxiety that's causing psychosomatic issues. Wish you the best of luck.
    Last edited by adeline14; 24-06-19 at 03:52.

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