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    Awaiting diagnosis

    Hi everyone.
    My husband has had arthritis in his left leg for many years. Before Christmas his mobility was greatly reduced, resulting in him holding on to furniture/walls within the house and unable to mobilise very far outside of the home. Following a consultation with his orthopaedic consultant, and a review of xrays the consultant saw no change or deterioration in his hip due to arthritis, rather he found over brisk reflexes and muscle wastage indicative of something neurological. At this stage referral was sent for MRI. Since Christmas my husband has had tremor in right arm, difficulty gripping with right hand, a lot of weight loss. Currently 8 stone 4lb, height 5 foot 9 . He has a great appetite and eats high calorific foods but continues to loose weight.He has had his MRI and has been waiting 3 weeks now for results. It’s such a stressful time. He is a very positive person and will not even discuss the possibility of any diagnosis which is good for his state of mind. I on the other hand am a nurse and no matter how many times I try to dismiss MND from my mind it keeps popping back!
    Family and friends don’t seem to understand. My husband is very good at hiding his illness eg if friends call to the house he doesn’t get up from the chair he is sitting in, he doesn’t accept a cup of tea ( he would spill it around himself). They then go away thinking he is fine and I’m left feeling as if I’m over reacting . Everyone seems to be burying their head in the sand. My husband is 55 , I’m 45 and we have 2 children, a boy aged 20 and a girl 16.
    I have been reading through posts on here and I am so sorry so many people are going through this journey but it seems a very helpful and supportive group which I hope to benefit from. Thanks to anyone for taking the time to read my post.
    Kittymcb

    #2
    Welcome Kitty!

    And thanks for posting about your situation.

    It's absolutely understandable that you're very worried. The uncertainty while awaiting results and diagnosis is really hard to cope with.

    No matter what the outcome, this is exactly the place to find help and support ...... and a big hug!

    Keep in touch.

    Doug

    Comment


      #3
      Doug,
      Thankyou for reply. Yes here seems to be a supportive safe place and i‘m glad I’ve found it.
      Thanks for the much needed big hug
      Kittymcb

      Comment


        #4
        Hi Kittymcb and welcome to the forum;

        Going through the diagnoses stage is very worrying and normally long winded. I hope that they find it's something else and not Mnd.

        Please feel free to ask any questions or just share things with us.

        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.

        Comment


          #5
          Terry,
          Thankyou for reply and support. I will be asking plenty of questions throughout the diagnosis process. Again thanks for taking time to read/reply
          Kittymcb

          Comment


            #6
            Hi Kitty and a warm welcome. I am obviously very sorry you need to be here but it is a really good place for friendship and support .

            Waiting for results and test results is so stressful and causes such anxiety. You're probably both so up and down, it's really hard not to use google and as a nurse you probably fear the worst. I really hope you get some positive answers and support soon.

            I can identify with your husband because I used to try and hide my symptoms and stay sitting when people called.. possibly because there was no answers to their questions.

            Sending both of you hugs,
            Love Debbie x

            Comment


              #7
              Debbie,
              Thank you for your response. Yes I feel you are right. If my husband had a diagnosis then he would be more able to explain reasons for his current problems/issues. He would benefit greatly from a wheelchair and some OT input into the home but is resisting all of this at present. Again probably waiting on a diagnosis to justify any supports. I can fully understand this but it’s very difficult to watch but I must put his needs first at the minute and respect his wishes/decisions. Hopefully things will be clearer soon.
              Again thankyou for reply.
              Kittymcb

              Comment


                #8
                Hi Kitty & welcome.

                Sorry for what you're both going through - am sure hubby is worried despite his cool exterior...

                Did the Neuro give any feedback during the clinical exam as to what it might be?

                The thing which doesn't really make sense is the big weight loss, given he is not eating less and having higher fat content foods at that. I know you say he has some atrophy, but that wouldn't account for such dramatic weight loss, would it?

                Is anyone concerned that he is < 53kgs?

                Hopefully he won't have to wait much longer for the MRI results. When is his next Neurology appt?

                There are other possibilities apart from an MND - let's hope it's a treatable illness...

                Big hug to you both.

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

                Comment


                  #9
                  Welcome Kitttymcb. Hope you get some answers soon x

                  Comment


                    #10
                    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

                    Comment


                      #11
                      Debbie,
                      I’m glad to hear that since diagnosis you have gottten the support you need. I’m just so sorry that you have been diagnosed. Yes the waiting is so hard. On one hand I don’t want a diagnosis but on the other hand at least we would know what we are facing and can be more proactive. I’m glad I have found this forum just to chat and to know there are many people in the same position as myself and my husband. Thanks again for reply
                      Kittymcb

                      Comment


                        #12
                        Hi Kitty,

                        Sorry to hear about your husband being unwell. Understandably, the uncertainty about what is causing his symptoms must be worrying for you both. Hopefully it will not be MND, and you will soon get support from an OT etc, whatever your husband's diagnosis is.

                        It sounds like your husband might be resistant about using a wheelchair (I think that his GP would be able to refer him to your local wheelchair services) - but perhaps he might be open to the idea of borrowing a wheelchair from the Red Cross, on a short term basis to aid his mobility at hospital appointments etc:-

                        https://www.redcross.org.uk/get-help...w-a-wheelchair

                        It can't be easy for you, if you don't have anyone to discuss all your worries with. Please feel welcome to ask any questions and return to this forum as often as you like.

                        The MND Connect helpline is also available, if you would like someone friendly and understanding to talk to.

                        Love and best wishes,
                        Kayleigh xx

                        Comment


                          #13
                          Hi Kittymcb. Very sorry to hear about your husbands symptoms and that you are both awaiting his diagnosis. Being a nurse will be of some benefit to him but I feel that it'll still be hard for you whatever he's diagnosed with. I hope that a diagnosis comes quickly so that your husband will get all the help and services that he needs, especially a walking aid and/or wheelchair.

                          I tend to sit when friends are here. That's mostly because I don't want to scare them and have to deal with questions and sympathy.

                          Don't forget to look after yourself. Take care, Lynne x
                          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.

                          Comment


                            #14
                            Hi Ellie
                            Thank you for response. We first saw GP after 3 weeks of attempting to get an appointment ( week after Christmas) she referred him to his orthopaedic consultant who referred him for an MRI. He felt symptoms such as brisk reflexes, muscle cramp, reduced mobility and tremor were neurological. He also said he would refer him to an neurologist which he has informed me has been done. 3 weeks ago on Friday he had his MRI. He has not been even seen yet by an neurologist. No one seems concerned about any of it never mind his weight loss! I’m at my wits end but my husband doesn’t like a fuss or perhaps has fears of what lies ahead. He wants to just wait and see what results come from MRI. Regardless of what results are I know my husband is very ill.. I think we have a long road ahead before we get any answers.
                            Thank you for your support
                            Kitty

                            Comment


                              #15
                              Hi Lynne.
                              Thank you for your response. Everyone here has their own worries and I appreciate all the kindness that has been shown to me today
                              Thank you so much.
                              Kitty x

                              Comment

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