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Thread: Awaiting diagnosis

  1. #21
    Quote Originally Posted by Deb View Post
    Kitty,
    Make sure you look after yourself too! I understand how hard it must be to watch your husband struggling and to have no answers as to why.

    In a strange way it was almost a relief for me to have everyone's suspicions confirmed and be diagnosed because we had OT and physio support to make the home easier and more importantly, safer. Using a wheelchair gave me much more freedom to be out and about and I stopped struggling to walk.

    However, fingers crossed ( and everything else ) for you that it is not MND as there are treatable conditions that have similar symptoms. The waiting period is so hard !

    Love Debbie x
    Hello there Kitty, your story is similar to ours. Not the symptoms I hasten to add. My hubby has had terrible arthritis for years and suddenly lost all mobility. He had an MRI which showed nothing and his rheumatologist decided he could be referred to a neurologist. At this point we paid to see a private neurologist and it was the best 250 we have ever spent.

    He was admitted to hospital by this neurologist and after a 2 week stay and every test going he got his diagnosis. As me and hubby are a bit thick we'd never considered MND! Hopefully your husband does not have MND and the symptoms are due to something much more innocent.

    We can say since the diagnosis we have had excellent care and support.

    I hope all goes well and you get some answers soon.

  2. #22
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    Terry,
    Thanks for taking time to respond. My husbands appetite is excellent and at present has no difficulties eating/swallowing. I have been ensuring he is eating well and eating high calorific foods fortified with full cream milk/ full fat cream etc. GP is of very little help. Yes I agree my husband could benefit from referrals to other services for support. Without a diagnosis my husband is not even discussing or acknowledging possible conditions etc. In his mind at present is this is a short term problem which will be cured or treated without the need for any other referrals! I myself know that support and aids and adaptations are needed but my husband is fiercely independent and extremely stubborn and for now I will support him with this. I feel once a diagnosis is confirmed he will be more accepting of support.
    Thanks again
    Kitty x

  3. #23
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    Hi music mans wife,
    Thanks for response. Yes my fear I suppose is the mobility deterioration has always been attributed to his arthritis. It’s been 2 years from he had been seen by orthopaedic consultant so really how long has his reduced mobility actually been caused by something neurological?
    Hopefully now that MRI has been done it will now be passed onto neuro and get an appointment soon.
    Thanks again
    Kitty x

  4. #24
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    Still no results and am feeling very isolated. Without a diagnosis I feel as if I don’t belong here but I don’t know where else to go for support. Apologies if I offend those who have a diagnosis. I just feel very lost and no one seems to understand. A family member said to me today “ no news is good news”. How on earth is no news good news! My husband can barely walk, he has falls daily and can’t carry a cup of tea without spilling it around himself! I’m also struggling getting the balance right between letting my husband keep his independence and helping him. If I do too much I’m fussing then other times he will get cross and accuse me of not wanting to help him! I know he is really struggling with it all but so am I. Sorry for the rant but it’s good to let of steam. Again apologies if I am being insensitive to those who already have a diagnosis.
    Kitty

  5. #25
    Forum Member Lynne K's Avatar
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    Hi Kitty. Don't apologise. I completely understand. You are doing your best. You aren't a mind reader and it looks like your husband either is either one of those people with a short fuse, taking out his frustration on you, or he just doesn't have the words to explain to you calmly how he feels and what he needs and when he needs your help.

    I sometimes feel that my husband does too much for me, and at other times he doesn't get it that I need help. In the beginning it felt like he was eager to take away my independence a long time before I was willing to let him. He seemed to sometimes enjoy the caring role, and at other times to be on another planet, detached from it. I felt at times overwhelmed by his 'fussing' seeing as I have had a lifetime of being exceptionally independent. I'd say 'no thanks, I can manage.' I have been the career in several different instances which I won't go into here.

    The difference with me I guess is I'm the patient understanding one and he tends to have a short fuse. He sometimes gets offended when I decline his help, and then a few minutes later when I really could do with help he isn't available because he's feeling bruised.

    So, you see I think that we all need to learn a new way of being with one another, but try to be patient and unruffled by little misunderstandings. We have had lots of conversations on this topic and we are getting the hang of it. It takes time to sort yourselves out and it's early days for the two of you.

    If your husband is open to talking about this that'd be a good move. But if he doesn't like to talk then your job is harder. At one time or another a Councillor might be a helpful thing to try. But I hope that the two of you can sort this out on your own. Good luck and take care. I and other forum members are here whenever you need to talk. I hope that your feelings of being isolated ease.
    Love Lynne x
    Last edited by Lynne K; 18th April 2019 at 11:21.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #26
    Have you phoned the consultants secretary? It wouldn't harm to chase it up. Sometimes no news *is* good news however it can also be a torment.

    Take care.

  7. #27
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    Lynne,
    Thank you for taking the time to read my post and reply. Yes it’s all about getting the balance right. My husband has never had a short fuse. He has always been so patient and would never raise his voice or be cross. I suppose he’s so frustrated at the minute as well. He has always just got on with life with no fuss, never complaining about anything, very private person. Now he’s easily annoyed, over sensitive and gets cross easily. I suppose I have to adjust to his new ways of coping and learn to cope as well. Thank you for your insight on maintaining your independence. I too like your husband have been trying to do things for my husband, thinking that I’m helping him. Again I need to learn new ways of doing this now too. It doesn’t help that he won’t talk about it and I do respect that at the minute he just can’t. Hopefully when we know what we are facing then it will be easier to talk. Thanks again
    Kitty

  8. #28
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    Hi music mans wife,
    Thanks for reply. The problem is he hasn’t been assigned a neurologist. Things have sort have been done back to front in his case. His original diagnosis is arthritis and it was his orthopaedic consultant that raised concerns that he had developed some neurological problem. He referred him for MRI and referral to neurology. I have contacted MRI department who have said the results have gone back to referring clinician which is the orthopaedic consultant. I have contacted his secretary and have been told results have been sent to neurology awaiting to be assigned to a neurologist. In this case I don’t think no news is good news. Either MRI shows something and if it doesn’t then he will face further tests and more waiting. It isn’t a case of nothing being wrong with him. He’s clearly very unwell. The best case scenario is that it’s something that can be treated/managed. Thank you for taking time to read and reply to my post. All support is greatly appreciated.
    Thanks again
    Kitty

  9. #29
    Forum Member Ellie's Avatar
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    Hi Kitty,

    Sorry you're both still none the wiser re MRI results - it must be over a month by now?

    By any chance does your husband's GP get a copy of the results? I also wonder if the GP would have more luck getting info from the Neurology department? If not, you can phone the hospital every few days (squeaky wheel gets oiled!)

    I also understand hubby's frustration, anger & the reaction to help - it is so bloody scary when your body will not do what you want it to do and very often we push those people away from us when they jump in and help, it's an acknowledgement that we can't do things. Illogical, yes, but there you go, we'd rather struggle on

    I really hope the MRI shows something.

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

  10. #30
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    Ellie,
    Thanks for your reply. Have phoned the consultant who did original referral. Secretary says he’s on leave this week! Phoned GP they have no results either according to receptionist. Asked to speak with GP am awaiting call back! I have a feeling MRI is clear and someone has looked at it and dismissed it as non urgent.
    Yes I know it’s so difficult for my husband to accept help, he always managed with his arthritis but he’s so unable to do so much now. This morning he dropped a glass and it smashed on kitchen bench and he was trying to pick up the pieces . It’s just so sad. Today for the first time in 22 years I mowed the lawns! It was always his job. So sad to see him standing at window watching out.
    Thanks again for your reply
    Kitty

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