Page 2 of 4 FirstFirst 1234 LastLast
Results 11 to 20 of 37

Thread: Hi and I am confused/scared

  1. #11
    Forum Member
    Join Date
    Jun 2019
    Posts
    14
    Hi Ellie, yes they are but I am still waiting for sensory and visual evoked results, my eyes are fine and no other issues. Still waiting for appointment date at Oxford.

    I just want a doc to say 'this is what's wrong and this is how we can fix it' although I appreciate it will not be that simple.

  2. #12
    Forum Member
    Join Date
    Jun 2019
    Posts
    14
    oh I forgot to mention clonus in the ankles too

  3. #13
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    3,058
    Did the Neuro replicate the clonus in exam?

    Yeah, they are all upper motor neuron signs but don't necessarily mean you have an MND - and to be diagnosed with ALS, you need lower motor neuron involvement too, and you're negative for that, which is good.

    Best wishes for your other test results.

    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
    Forum Member
    Join Date
    Jun 2019
    Posts
    14
    hi, yes he did.

    Thank you all for your comments, they have been really helpful

  5. #15
    Forum Member
    Join Date
    Jun 2019
    Posts
    14
    just an quick update. My sensory and visual evoked results are all normal. So the only symptoms i have are:

    I can hardly walk ( i use crutches)
    positive babinski and hoffmans

    my wife is concerned about primary lateral sclerosis.

  6. #16
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,588
    Hi Gloslad,

    I can understand her worries. Just hope that it is something else.

    Best wishes, Terry

  7. #17
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    3,058
    Hi Glos,

    Yes unfortunately PLS is a possibility, but not the only one.

    Have you a date for Talbot yet?

    Best wishes.

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

  8. #18
    Forum Member
    Join Date
    Jun 2019
    Posts
    14
    no not yet, just waiting for the letter to arrive.

  9. #19
    Forum Member
    Join Date
    Jun 2019
    Posts
    14
    me too Terry

  10. #20
    Forum Member
    Join Date
    Jun 2019
    Location
    India
    Posts
    10

    Red face Donít be scared

    Hi everyone
    Dont be scared
    Just be strong , the more you think for it , it will get worse.
    Happiness is the best treatment
    No matter how much pain you get , just smile and say to yourself yes i can handle it .
    Anyone who is not able to be happy by being positive by yourself , just try spending time with kids . I am sure they will make you laugh .
    Whatever you are left with just live happily ❤️
    Its 4 years to me diagnosed with MND
    i was depressed for a lot of time but then i decided to live happily .
    Today my body has become so weak but still i smile and say i am fine.
    Dont count yourself as ill.
    You are fine just living life differently.

    I would be really happy if anyone wanna talk to me 😊
    Text me

    Love from
    Madhur

Posting Permissions

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