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I’m so terrified

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    I’m so terrified

    I hope I don’t seem insensitive by posting as I don’t have a diagnosis I’m today having an EMG.

    About 8 weeks ago I first had a pressing feeling in throat and now swallowing feels a bit awkward. My tongue is scalloped around the edge.

    I then developed a twitch in my thumb.

    I’ve had some cramping in legs and have twitching all over body normally at rest whilst laying in bed. They are from feet to face, neck, feet, buttocks many in back of chest. Also some mild cramping and left leg has buckled a few times.

    my right hand started with stiffness in morning and last couple of weeks also left hand.

    I just don’t understand how all this could occur within 8 weeks.


    I went through a breakdown a few months ago which has left me with the start of early cataracts which can be caused by oxidised stress. I believe this can also be a factor in MND.

    I’m absolutely terrified. I am a single mum of 48 with an amazing daughter.

    Again I hope I haven’t upset anyone by posting. I’m just terrified.

    Thank you

    #2
    There is nothing to fear except fear itself. Be Strong. 🤗😚👍🙏xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      Hi Helen212

      I am sorry that you have concerns about symptoms. I think you may have spoken to us here at MND Connect a few times.

      Please do give us a call. Some times it can be really helpful to talk through your concerns. You're going through a really awful time at the moment and we are here to support you. Please do give us a call on 0808 802 6262.

      Best Wishes

      Rachel
      MND Connect Adviser
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]

      Comment


        #4
        Hello Helen212 - There are many things which could be mimicking your symptoms. Good luck with emg. Love to you xx

        Comment


          #5
          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

          Comment


            #6
            Congrats on your normal EMG
            Helen212
            Forum Member
            Helen212

            Did you get the results from the EMG? They, and the summary/conclusion, should give you lots of info.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              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.

              Comment


                #8
                Hi Helen212,
                so are you off to see a consultant about the EMG results? Or what’s next?
                Best wishes
                Mary

                Comment


                  #9
                  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

                  Comment


                    #10
                    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

                    Comment


                      #11
                      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.

                      Comment


                        #12
                        Helen212
                        Forum Member
                        Helen212 Ask for the EMG report.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          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

                          Comment


                            #14
                            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.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              I've had fasciculations in my lips, eyelids and just about everywhere else. 😁👍😄😆xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment

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