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    I’ve had 24/7 calf twitches now since late May which followed episodes of fatigue and stiffness (the stiffness I still have now) the twitches have migrated to right thigh, left shoulder and right arm although they are more sporadic.

    I am absolutely terrified of ALS given I have a young family and I’ve been in this terrible rabbit hole for 5 months. I have suffered with Health anxiety for about 15 years and this is the worst episode I’ve ever had.

    I have a private neuro appt on Thursday where I hope a clinical exam will give me reassurance but wondered if my experience has been mirrored by others?

    thank you for reading

    villa07 I'm sorry you have such debilitating health anxiety and I hope you're getting help and support for it.

    Remember to write down any questions you have for the Neurologist and make a note of the answers and of remarks made during the appointment, then you can revisit the notes at any time for reassurance.

    Thursday isn't far away, as only a doctor can give an opinion re your symptoms.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Dear villa07,

      I am sorry to hear how you have been struggling with the thought that your symptoms may be those of ALS.

      As Ellie has commented, your appointment with the Neurologist is very soon, and it is a really good idea to make sure you write down any questions you may have and also relevant details about when and how your symptoms first appeared.

      The neurologist will examine you and ask you about your symptoms to understand what has been happening to determine what will be the next steps.

      The Neurologist may refer you for tests such as an Electromyogram (EMG) nerve conduction test, MRI if there is any basis to do so.

      If you would like to speak to an MND Connect Adviser at any time, please do not hesitate to contact us. Our contact number is freephone 0808 802 6262 and our email is: [email protected] The Connect team are available to support you and answer any questions you may have.

      Kindest regards
      Jacqui Anderson
      Senior MND Connect Adviser
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]