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I’m so terrified

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  • Helen212
    replied
    Sorry to post again.

    so worried.

    cramp in leg and stiffness just won’t go. Stiff fingers around joints. I’m clumsy I’m dropping things my speech sounding my s’s has been noticed when I have asked friend for opinions.

    I went to see a specialist and I think my reflexes were a bit off, but he said it can be normal when stressed. He’s going to do another EMG and has now ordered the related blood test which has worried me more. He said my old Achilles injury would probably account for something which he noticed in testing reflexes.

    the twitches are so tiny and quick I don’t get time to video them like he asked. Some I see but don’t feel which worries me even more. They are like tiny ripples as soon as I stretch in the morning they begin. Many concentrated around calfs now but still get them all over.

    I’m having involuntary swallowing still on waking too.

    The specialist I saw last week said it was probably BFS and the symptoms would go but they just seem to get worse.

    Trying to keep it together, so worried if blood test comes back high I’ll feel as if I know.

    delaying going for it.

    Sending thanks and kind wishes to you all.




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  • Ellie
    replied
    Don't worry yourself Helen.

    EMG testing for ALS looks for fibrillations, motor unit activity etc. etc. so that none were found on your test is good news. It matters not a jot whether you twitched or not.

    A diagnosis of ALS is made on the basis of clinical exams, an EMG and mimics having been excluded.

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  • Helen212
    replied
    Yes, that’s a good idea.

    I don’t remember actually having any as I lay there and he inserted needles. Would it matter if they didn’t occur during the EMG exam do you know?

    I’m so sorry to bombard you with questions.



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  • matthew55
    replied
    I've had fasciculations in my lips, eyelids and just about everywhere else. 😁👍😄😆xx

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  • Ellie
    replied
    In ALS, fasciculations are the result of the ongoing disruption of signals from the nerves to the muscles so, if your fasciculations were caused by ALS, your EMG would have shown them.

    Get the report before Tuesday, you went private, you're entitled to it - read the conclusion carefully, it should state findings and any next steps and you'll be better prepared for Tuesday's appointment.

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  • Helen212
    replied
    I will do Ellie,

    I’m worried it was performed too early as twitching had only been present for just under 3 weeks.

    I’ve tried to ask the Nuffield to squeeze me in with a Dr in Leamington today but he’s unable to stay.

    I have an appointment next Tuesday there. Need to get referral from my GP.

    Thank you again

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  • Ellie
    replied
    Helen212 Ask for the EMG report.

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  • Helen212
    replied
    Thank you Mary I’m trying

    I just keep thinking that as my twitching is so widespread the EMG would have picked up some indication.

    Your kindness is appreciated it really is.

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  • Mary C
    replied
    Hi Helen
    When I saw my neurologist after the EMG, MRI he was able to examine me and give a diagnosis there and then.A specialist in MND is a good idea and just keep busy this week anxiety/ worry can overwhelm you.
    During my “waiting “period for tests and diagnosis I cleared out wardrobes, drawers, gardened, baked ..anything to achieve something daily.So glad I did a lot of clearing out as now reliant on hubby to do those tasks.
    Really hope it’s good news for you...
    let us know.
    Best wishes
    Mary

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  • Helen212
    replied
    Hi Mary,

    thank you

    I’ve requested to see consultant face to face as I haven’t yet been examined physically. The consultation was by phone on a bad line it was awful. I’ve booked to see a specialist in MND for next week as I’m so worried. Awaiting original Neuro to get back to me with results. My GP gave me a basic Neuro type test, pushing, squeezing etc. She looked baffled when I asked her to look at my wavy tongue. Just asked if I’d been to dentist lately,


    I feel every twitch in my body, tongue etc.

    Sick of hearing it’s probably all anxiety although GP has witnessed the twitching.

    apologies for rambling on and on.

    With best wishes and thanks

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  • Mary C
    replied
    Hi Helen212,
    so are you off to see a consultant about the EMG results? Or what’s next?
    Best wishes
    Mary

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  • Helen212
    replied
    Thank you Ellie,

    no actual results yet, the Dr who performed it said seemed ok.

    keep looking at the post that Rose did of internal vibrations in the chest, and scalloped tongue 6 months prior to diagnoses and it frightens me so much.

    Again a huge thank you for taking the time to post.

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  • Ellie
    replied
    Congrats on your normal EMG Helen212

    Did you get the results from the EMG? They, and the summary/conclusion, should give you lots of info.

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  • Helen212
    replied
    Thank you for replies and support it is very kind of you all.

    I had EMG on Wednesday which was clear they said but I’m so confused.

    I have read a post on forum which really resonates. Vibrations through chest in morning. Scalloped tongue, speech nasal and quieter and I’m sounding my s’s My tongue twitches as do many areas on body. Swallowing is more difficult , post nasal drip first time ever. My fingers have to be prised open in mornings. I worry I’ve been tested too early and this is bulbar in early stages. I haven’t actually been examined by Neuro, he just referred me for EMG (private appointment) I feel so unsupported my medical profession.

    I apologise for this post for countless reasons.

    So terrified. Don’t feel I’m being listened to.

    Sorry
    Helen

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  • Gordan1111
    replied
    Hello Helen212 - There are many things which could be mimicking your symptoms. Good luck with emg. Love to you xx

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