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Wobblyheart

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  • A
    Hello! I just thought I'd answer you here instead of on someone else's profile. :) I am ok. No worse. Trying to stay positive while waiting for the EMG. I have had the twitching before, but the right arm reflex where I thought I was going to punch myself in the face is new and scary. I am going to re-read your thread. For some reason, I was thinking things were looking up. Try to stay positive...

    April
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    A
    April E
    @Wobblyheart we will pray for a veritable Mystery Mule Train. :)
    W
    Wobblyheart
    @April E its just mad me then 😅 tbh I could only test my knees (I tried others too but it didn’t work).

    Oh the bitten tongue sounds painful. I feel like my jaw is also very stiff and I get an occasional twitch in it / face / eyes. Very unnerving , no pun intended
    W
    Wobblyheart
    and yes - here’s to weird and wonderful and benign. On that same note, I was suspected for a rare type of cancer (and still have a visible lump in my buttock) but it turned out ti be a rare benign thing so I guess you never know. Just hard to keep perspective when feeling so unwell.
    C
    Hey there! Checking in to see how you are doing?? Have you had your EMG?
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    Cmh89
    @Wobblyheart she did my tongue. And I think my left trap? I don’t have the report (which is also making me nervous that it’s taking so long). But I’m worried it’s all UMN related in my mouth…constant stiffness in cheeks/jaw/tongue/lips, speech difficulty, and increased gag. I’ll have to talk to her on Tuesday about it. I’m so sorry you’re in the same boat. Do you know what your next steps are?
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    Wobblyheart
    @Cmh89 i completely understand how you feel and have the same worries. I am booked in for follow up with neurologist in two weeks but thinking about getting a pulnomary assessment as well as my breathing is really affected - out of breath and worse when laying down or any activity.
    W
    Wobblyheart
    @Cmh89 let us know how you get on, I totally get the UMN worries but good that you had a thorough EMG.
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    S
    Hi! There seems to be at least 3 women, scaredmommaoftwo, you and myself, all approximately the same age with the relatively same symptoms. My doctors after almost a year are still stumped. I keep getting the negative for everything but something is going on line of dialogue. Were you able to figure out what was going on with you?
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    Wobblyheart
    I was tested for pernicious anemia and addissons a couple of years back , before onset of these symptoms, all normal.
    Do you have a clean EMG? I am yet to see a neuro and to get one, really scared as I am losing dexterity in my left hand and the twitching is now widespread, never had that before in my life so weird.
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    Wobblyheart
    I have just read your thread, holy cow you’ve been through so much with all the appointments and my hat off for being a mum of six! Has anyone from neurologists mentioned FND to you? A few people who had it mentioned it to me and they had really debilitating symptoms.
    W
    Wobblyheart
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