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Some advice please

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    #16
    Did you have a muscle biopsy in your investigations??

    Best of luck getting to the crux of your myopathy and happy for you that it's not ALS/MND.

    Love Ellie.
    ​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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      #17
      Thanks Ellie.

      No not had a muscle biopsy (yet) although this was mentioned by my neurologist. I had an MRI on my thigh muscles a few weeks ago, apparently this might show something. It's all a mystery 🤔

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        #18
        Don't let them forget about doing a muscle biopsy - it could provide vital clues.
        ​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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          #19
          Oh Diamond, wow, your amazing for all that you’ve done, only you know how your feeling, Me and my Family have had our own battles with medical professionals and unfortunately not all of them are knowledgeable as they believe but there are so exceptional professionals out there and you keep shouting from the roof tops till you are given the support you need to live and protect your family and I hope they give you answers so you can live your life the best you can, fingers crossed

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            #20
            Thanks Hayls. That has been my experience too, some very good doctors and some not so much. I have had to push the NHS for absolutely everything e.g medication, physio, referral to a specialist....this in itself is exhausting.

            I've had a fair few melt downs I can tell you. This being in limbo is really awful.

            The fact I have just deteriorated since first going to GP in Feb 2019 makes me think that I won't ever get better. Whatever I have, it seems to be life changing.

            I have absolutely no control over what is happening to me so I have to try my best to be positive. The anti depressants have really helped.

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