Results 1 to 6 of 6

Thread: New diagnosis

  1. #1
    Forum Member
    Join Date
    Mar 2018
    Posts
    31

    New diagnosis

    Hi my name is Liz, my husband was diagnosed in February,it was thought he had msa for over a year prior to this. I had to call a doctor on Sunday 08/04/18 as his temp was elevated ,and his mobility suddenly got a lot worse. He started antibiotics on Sunday,his temp has come down but he can barely walk with myself and son helping him. Last night he had what looked like a seizure,his eyes rolled his hand were rigid. Before we could ring anyone he came too. He didn't want a doctor,He isn't eating but us drastically losing weight. He uses catheters intermittently but he's struggling with them now. He's just sitting in his chair ,I feel useless and scared. I don't know what I should be doing,listening to my family on ringing a doctor or listening to my husband who us insisting he doesn't want a doctor. He also has copd,chrohns disease,an enlarged left ventricle and his bladder stopped working. What should I do thanks liz

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,331
    Hi Liz,

    Sorry for your husband's various health conditions. You've both had a tough few days.

    Can I clarify please - does he have a diagnosis of MND or MSA?

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

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,833
    Hi Liz and welcome to the forum,

    Sorry to hear of your husband'sserious problems and your obvious concern.

    You could ring mnda connect as they will give you advice and support.

    If your husband has a neuro nurse or specialist i would contact them.

    Antibiotics, fever and not eating can knock you back at way.

    Not being able to release liquid or restricted drinking is very dangerous.

    I wonder if he can have a different type of catheter fitted.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member
    Join Date
    Mar 2018
    Posts
    31
    Hi thank you for answering me so quickly. It's Als(Mnd) it also said beside the diagnosis ,als related dementia, though that's never been discussed with us. He had what was like a sezuire on Monday night. Now he seems very confused and his speech is a lot worse. I have the doctor coming in later to discuss an indwelling catheter. I feel at least with that he doesn't have the problems of using his catheters during night and day. I'm confused as no one has explained everything to us. Hi is breathing is worse on movement . He wears his mask at night. Is he nearing the end stages with all this . I'm scared for him but don't know what to do next

  5. #5
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    Location
    Sunderland
    Posts
    205
    hello all my mam wanted at the end was for me to stay with her .

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,331
    I'm sorry you've been left in the dark Liz. It's unacceptable really that you're grappling for answers.

    The seizure like episode isn't ALS - again, I'm sorry you've unanswered questions about this scary event. (It may have been related to MSA if he had that, which is why I asked re diagnosis)

    With your hubby's comorbidities, there should be a doctor overseeing his care, but I guess that's not the case.

    A suprapubic catheter sounds like a good idea, as it should make both of your lives a bit easier.

    I wish you well in the challenging times ahead Liz and hope you have good support.

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

Posting Permissions

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