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1 month in and I’m scared

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    1 month in and I’m scared

    I was diagnosed a month ago
    I keep having panic attacks
    I’m scared of what’s happening to my body and what the future may bring

    sorry just feeling a bit low today n I though this group would understand
    Diagnosed 17/2/22
    summer 2020 - Left arm onset
    Jan 2022 - breathing now affected

    #2
    Hello Chelle,

    Sorry to hear that you are feeling very down today, we all get these days from time to time 😔

    Have you thought about talking to your doctor and maybe considering CBT? It was something that I had when I was diagnosed and it helped me cope much better mentally x

    James x
    Foxes Never Quit 💙

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      #3
      Thanks - I’ll try - getting to see my GP is very difficult these days - I’m lucky if I can get past the receptionist.
      in my area we don’t have an mnd nurse either as still recruiting so I’m being “looked after” by the area coordinator
      Diagnosed 17/2/22
      summer 2020 - Left arm onset
      Jan 2022 - breathing now affected

      Comment


        #4
        Originally posted by Chelle73 View Post
        I keep having panic attacks
        Sorry to hear that Chelle, it can't be easy for you dealing with panic attacks.

        I also had counselling which helped me enormously; it helped me put things in perspective and freed my mind.

        Meds can help you too, so don't be afraid to take them.

        Sending you a big hug 🤗🤗😘😘
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Originally posted by Chelle73 View Post
          Thanks - I’ll try - getting to see my GP is very difficult these days - I’m lucky if I can get past the receptionist.
          in my area we don’t have an mnd nurse either as still recruiting so I’m being “looked after” by the area coordinator
          I am in Derbyshire and I’m quite lucky that I have a good MND team at Derby Royal. They have put me on something called ‘shared care’ which gives me a bit of a priority at the Doctors, it might be worth finding out if you have this status where you are?
          Foxes Never Quit 💙

          Comment


            #6
            Originally posted by Chelle73 View Post
            I was diagnosed a month ago
            I keep having panic attacks
            I’m scared of what’s happening to my body and what the future may bring

            sorry just feeling a bit low today n I though this group would understand
            Think we all feel like that at times. It’s a perfectly natural reaction to the situation we are in. To be honest I don’t have any answer just keep on plugging on unhappily at times. This isn’t helping much so I will stop now.

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              #7
              I was getting nowhere with my g.p so I made a complaint stating I would escalate the complaint to the quality care commission. I quoted the gold standard of care that terminally ill patients are under. They soon invited me in.

              I asked for email contact due to my speech and they did that. Unfortunately I've got used to complaining as well my departments are not great.

              Unfortunately we all have really bad days. But all I can say is make the most of the better days. Xx
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                Chelle73 - sorry to hear you are having what I call a wobbly tantrum day. I tend to have fewer now the shock of diagnosis has passed a couple of months, so hopefully maybe you will too?

                I'm out in the sunshine reading a book. All feels completely normal, except I'm stuck here cos I can't actually get up. But at least I'm not at work 🙂
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                Comment


                  #9
                  For what it’s worth, try listening to some mindfulness recordings. It may help to calm your anxiety x I’m sorry you are having a bad day but you are not alone I know it’s hard x I found the mindfulness helped but give it time x

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