Page 2 of 2 FirstFirst 12
Results 11 to 14 of 14

Thread: Some advice please

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,485
    Just re EMG: it doesn't matter that your neck muscles weren't tested. Neuronal damage would be widespread and would be very apparent on the EMG.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    That's reassuring then. Thanks. X

  3. #13
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,485
    Diamond, to rewind - you were diagnosed with dystonia in March, had Botox (in your neck because that's where the dystonia was??) and then developed head droop?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
    The head drop is caused by a problem with my neck and has always been there. The neurologist I saw in March thought my head drop was caused by dystonia. Muscles mis behaving and pulling my head forwards. I went with this and had the recommended Botox treatment. There was absolutely no benefit but it certainly didn't make the problem worse. Given my other symptoms and the fact Botox didn't work, I started to question if I really do have dystonia hence seeking a second opinion. I have read that head drop can be an early presenting feature in MND although it is rare.

    Everyday my neck seems worse but this is only half the problem. The muscles in my upper body are so tight when I am standing or walking around making doing everyday things really difficult. My limbs and joints ache. My muscles twitch.... blah blah blah....I feel like a broken record. I just want someone to tell me what's wrong with me.

    It's a very lonely experience when nobody can know exactly how I'm feeling and it's really scary how very slowly my body seems to be giving up on me and why this is happening I do not know! I'm sure other people must have experienced this.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •