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    Could this be ALS?

    I'm not sure about posting on here but I have an appt with a neurophysiologist soon and am feeling worried.

    I'm concerned about my ongoing symptoms.
    My fasciculations started to happen a couple of months ago and progressively fire off in all parts of my body, especially my tongue and abdomen, neck and feet as well as limbs whilst I'm at rest. I can feel them and they feel like small jolts. They are visible when my tongue is in my mouth at rest.
    I have woken up in the middle of the night on many occasions unable to move or lift my left arm wrist or fingers properly for a few minutes. My wrist and fingers are curled and my forearm is bent. When I try to move it, my forearm goes in all sorts of directions (apart from the way I want it to) then it seems to subside, my fingers cannot be moved either. it's happening more often and came on the same time as the twitches. it does go away for a while but then comes back often at night. Does this sound like spasticity? I'm also waking up on a morning where i experience pain my ribcage when I breathe. I'm also waking up at night gasping for breath on occasions. Does this sound like ALS?
    I am 40 with 4 amazing children and am incredibly worried at the moment.
    thank you in advance.


    #2
    Hi Becca

    I'm really sorry to hear about your concerns. It must be dreadful having such a lovely family and thinking the worst.

    no one on here can advise if you might or might not have mnd. Really you should wait and find out from a specialist.

    I hope it isn't. I'm sorry I can't help but I wish you the best and hope you have a positive outcome.

    love and hugs Denise xxx
    when i can think of something profound i will update this.

    Comment


      #3
      Hi Becca,

      it sounds like you have a lot of problems going on there, all of which are a worry, but as Denise says the only person that can diagnose is the specialist - there are many many copycats to this disease,

      I wish you well and hope you don't need to come on here for the future,

      Best Wishes

      Sue
      Husband Albert diagnosed PMA Feb 21

      Comment


        #4
        Hi Becca, I too am really sorry about your worrying symptoms. As Sue said your got a lot going on and not surprised that you’re worried when you have such a lovely family. None of us can confirm or discount MND/ALS. So waiting to see the specialist is best. I hope that it turns out to not be MND. Take care, and I’m sending you hugs 🤗 🤗 🤗, Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

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          #5
          Hi Becca. Hope it proves to proves to better news than you fear from neurophysiologist. These things can have many mimicker and other origins. The waiting is horrible. Best wishes. x

          Comment


            #6
            Originally posted by Becca View Post
            Does this sound like spasticity?
            No, it doesn't.

            Presumably you saw a neurologist who referred you for testing by a neurophysiologist - what does the neurologist think may be the underlying issue?

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

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              #7
              Originally posted by Ellie View Post
              No, it doesn't.

              Presumably you saw a neurologist who referred you for testing by a neurophysiologist - what does the neurologist think may be the underlying issue?
              It was a referral from my GP. After he did the referral, I've decided to go private for the initial consultation to speed things up a bit. The waits on NHS are understandably long due to the pandemic. GP didn't say much but thinks it's a neuro problem from the consultation.
              I'm worried sick tbh

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                #8
                I was wondering why I wasn't referred to a neurologist in the first place!

                Comment


                  #9
                  Ah, going private explains it.

                  You can ask the neurophysiologist your questions, who will hopefully allay your fears.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    I've spoken to him already via email about appointment times and my symptoms. He said I need an urgent neurophysio exam and possibly EMG. Waiting to hear back from him today with appt times.
                    i forgot to mention I had to take a pregnancy test last week because I felt something kicking in my lower abdomen. It was negative , when I looked at my abdomen, it was twitching. Don't know wether to be pleased or disappointed lol

                    Comment


                      #11
                      Hi Becca I’m praying and keeping everything crossed for u that it’s not mnd / als !!
                      I was diagnosed at 40 with 4 beautiful kids and it’s been tough so I know the stress u are going thru as will most people on here . I hope u get some gd news soon x

                      Comment


                        #12
                        Originally posted by Patw View Post
                        Hi Becca I’m praying and keeping everything crossed for u that it’s not mnd / als !!
                        I was diagnosed at 40 with 4 beautiful kids and it’s been tough so I know the stress u are going thru as will most people on here . I hope u get some gd news soon x
                        Im so sorry to hear of your diagnosis. Thank you for your kind words

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                          #13
                          Thank you and will keep my fingers crossed that u get a good outcome 🤞

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                            #14
                            Went for EMG on Saturday. Wouldn't give the results straight away so have to wait around a week. He put a needle under my chin into my tongue (my tongue twitched) then my left arm and my left leg. I'm very nervous now.
                            I forgot to mention also my ring finger on my left had side has been twitching from side to side on and off for a couple of years now.
                            was under the impression EMG results could be given on same day. Anyone get theirs straight away?

                            Comment


                              #15
                              Hi Becca All vry scary. i am told that an EMG would probably have been done along with nerve conduction. Neither the perosn doing the nerve conduction nor my consultant ever mentioned EMG, so it i on my list for my next MND care appointment.

                              Like everyone elso on here, we all want your answer to be that it is NOT MND.
                              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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