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    Hi there,

    Let me start off by saying I wish everyone on here the very best and I haven’t been diagnosed as of yet, but I’m just going through a very worrying stage.

    My story is basically last April/May I started to have breathing difficulties on and off and what I called panic attacks due to work stress but I believe they are possibly due to MND now. I brushed them off but it’s progressed further and any time I speak regardless of the situation I feel short of breath, I can do less in the gym etc and everything feels totally off. My limbs at the moment feel unaffected but I have widespread twitching which started in my legs and feet 6 weeks ago and has now reached my chest, tongue etc. I’ve never been anxious person and I’ve constantly been told it’s anxiety by family members etc, but I have a GP appointment today after being brushed off or ignoring what I tried to tell them. I also can’t get a full nights sleep without waking and gasping for a breath. I understand it sounds like anxiety, but I’m 30 years old, fit and healthy and even walking long distances is a task when I could run/walk easily a year ago.

    I’m a young guy based in Scotland who got engaged the end of last year I am beyond terrified now.

    #2
    Out of all the blood tests I’ve had so far only my iron levels have been higher. Not sure if it’s related in any way as I don’t have a lot of knowledge on the subject.

    Comment


      #3
      Hello and welcome.
      We can't offer medical advice here, and the only way to know for sure is a lengthy diagnostic process to eliminate all other possibilities.
      If you need us, we are a friendly community with lots of shared experience, support and advice to offer.
      Best wishes for you.
      Hi, I'm Eddie.
      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
      Still walking and talking, and wondering what the future will bring.

      Comment


        #4
        Hi Eddie,

        Thanks for the reply. I’ve just been very scared and trying to go about my daily life without burdening too many people but I’m starting to struggle majorly and I’ve been very forceful with the GP to do a thorough check and refer me if necessary. I’m going back in today.

        Comment


          #5
          Even if it is MND (heaven forbid) it presents in many different ways in different people.
          As you can see in my footnote I started with joint problems, so my diagnostic journey started with physiotherapists and various other branches before I got to a Neurologist who nailed it.
          If it is any reassurance, my blood tests showed an astronomical level of something (?) that was the major clue to what I had.
          Hi, I'm Eddie.
          Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
          Still walking and talking, and wondering what the future will bring.

          Comment


            #6
            It’s not something I ever thought of, Eddie, but a lot of the signs feel to be pointing that way and I know it’s easy to let your mind run wild on a subject that’s so diverse but I can’t help it now. The widespread twitching and progressive breathing problems (basically feels like I can’t catch a big enough breath and it leaves me agitated) that I decided to put down to anxiety despite never believing it myself are just scaring the life out me.

            Appreciate the replies.

            Comment


              #7
              Think you need to see a neurologist as soon as possible to make a proper diagnosis as to what it is. Good luck.

              Comment


                #8
                Thanks Aidan. I’m not a pushy person so I’ve tried to play it off and just get by but the breathing situation isn’t good and I’m so worried now. I’m going to the GP in an hour so I’m hoping it’s the beginning of getting somewhere, but just not where I think it will end up.

                Comment


                  #9
                  Please explain all of this to your GP today and ask for a referral to a neurologist if it’s appropriate. What you have described could be down to many things, for example……benign fasiculations are very common and often go hand-in-hand with stress.

                  MND is very rare, please try to not worry.

                  Good luck.
                  Foxes Never Quit 💙

                  Comment


                    #10
                    Welcome aboard
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Thanks guys.

                      I was reluctant to sign up because at the end of the day if it isn’t what’s wrong with me who am I to come on here and burden guys when you’re dealing with one one of the cruelest diseases out there, but I just felt like I needed to speak to someone outside my own circle as it’s hard to get anyone to see past anxiety/panic attacks when it doesn’t feel like that to me. Like I’ve said - I could be wrong and I’d love to be.

                      I explained my fears to the GP and she done her tests and put something on my finger to check oxygen which was fine apparently but she’s also referred me to a neurologist for my own sanity I think. Not sure how long that takes to be honest, I’d imagine months in the current climate!

                      Comment


                        #12
                        Originally posted by GIB1991 View Post
                        Thanks guys.

                        I was reluctant to sign up because at the end of the day if it isn’t what’s wrong with me who am I to come on here and burden guys when you’re dealing with one one of the cruelest diseases out there, but I just felt like I needed to speak to someone outside my own circle as it’s hard to get anyone to see past anxiety/panic attacks when it doesn’t feel like that to me. Like I’ve said - I could be wrong and I’d love to be.

                        I explained my fears to the GP and she done her tests and put something on my finger to check oxygen which was fine apparently but she’s also referred me to a neurologist for my own sanity I think. Not sure how long that takes to be honest, I’d imagine months in the current climate!
                        I was told by my GP thar it would take many months to see a neurologist on the NHS so I went private and saw someone quite quickly. He diagnosed MND. The appointment didn’t cost that much though the tests to rule out other stuff did, ct scan mri scan and blood tests.

                        Comment


                          #13
                          GIB1991 If the GP was concerned about your breathing, you would have left the surgery with a referral for a Respiratory Consultant, irrespective of the cause of breathing difficulties.

                          That your oxygen levels (Sats) are completely normal and the GP obviously didn't notice shortness of breath, is great news.

                          Your anxiety levels are naturally through the roof right now which, unfortunately, will only make your twitching and breathing worse and have you going around in circles.

                          Best wishes.

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

                          Comment


                            #14
                            Ellie I did think normal Sats overall was a positive sign. One thing concerning me was slightly high iron levels in my bloods. I think I may go private with a neurologist as I don’t think I can wait months feeling like this.

                            The twitching coming on weeks back on top of what I felt was constant shortness of breath and waking up restless during the night etc has really got me worried, there’s no denying that, but I just felt the worry came after the breathing and twitching etc which has probably sent me down the MND route. Like I’ve said, I hope I’m wrong and pray I’m just being an idiot.

                            Thank you for the advice.

                            Comment


                              #15
                              Originally posted by GIB1991 View Post
                              Out of all the blood tests I’ve had so far only my iron levels have been higher.
                              Oh, I missed this post.

                              So, you obviously have been to your GP on at least one occasion about your issues - I read your " but I have a GP appointment today after being brushed off or ignoring what I tried to tell them " as that you had no medical appointments until today.

                              Again, if that blood iron level was a concern, it would have been addressed by your doctor - it means nothing, good nor bad, in relation to ALS.

                              Twitching on its own generally means nothing, especially when it's widespread, and usually it's lifestyle, stress, sleep or hydration related, though of late, it could be Covid related.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment

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