Page 2 of 2 FirstFirst 12
Results 11 to 20 of 20

Thread: Some advice please

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,736
    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
    3,736
    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.

  5. #15
    For those of you kind enough to respond to my original post a few months ago, I thought I would update you.

    I had a brain MRI in July which came back normal.

    I had another EMG in Sept and this showed myopathy in the left thoracic paraspinal muscles as well as excess motor units in left deloid and bicep. No evidence of nerve involvement as far as I understand.

    At my request, I was referred to Prof Shaw in Sheffield and she wants me to go into hospital for a day of tests in the new year. She said she doesn't think it's MND due to there not being any nerve involvement and the timescales don't fit with MND (first symptoms noticed Sept 2018).

    Regardless of this, I continue to deteriorate albeit very slowly. I have been off work since May and bit by bit my old life is slipping away. I struggle to walk very far and can no longer take my children out without help. This has been a year of utter hell not just for me but my family too. I started on an anti depressants in August which have helped me deal with what is happening. I have a head up collar on order and am hoping this helps with my weak neck. I am also on baclofen to help with muscle stiffness in my back although can't say that I've noticed much difference.

    I'm really hoping to get some answers in the coming year.

    Happy New Year to everyone and here's hoping for good things in 2020.

    X

  6. #16
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,736
    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #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 🤔

  8. #18
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,736
    Don't let them forget about doing a muscle biopsy - it could provide vital clues.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #19
    Forum Member
    Join Date
    Jul 2019
    Location
    Bournemouth
    Posts
    80
    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

  10. #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.

Posting Permissions

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