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So worried about my husband

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    So worried about my husband

    My husband is 83 but just a year ago was described by a gastro enterologist as "in good general condition". He started tiring easily and finding difficulty walking at least 18 months ago.
    We made repeated visits to GP as she didn't seem to understand how debilitating this tiredness was and how much my husband's life had changed as a result. About 5 months ago he started to have
    problems eating. Swallowing became difficult and he was eating less and less, in the end losing 20 kg, almost 3 stone.

    During this time, there were visits to gastro and ENT specialists but attempts to carry out an endoscopy were unsuccessful as my husband couldn't accept the tube being put down his nose. As his weight loss was so dramatic, just over a month ago, it was decided to carry out the endoscopy under general anaesthetic. He was supposed to stay just overnight but the doctors were so shocked by his weight loss they decided to keep him in - he had never been a large man and the loss of 3 stone had left him all skin and bone. It was quite shocking to see and broke my heart. This led to my husband having a neurologist consultation. The notes I read afterwards said bulbar? motor neurone disease? Appointments were made for brain MRI and EMG for throat and neck. The MRI is tomorrow but the EMG later.

    My husband was in hospital for 6 days during which time they repeatedly tried to fit a nasogastric tube. He was in great pain during these attempts but when I asked if it could be done under general anaesthetic, they said he was too weak. He was discharged but we were told if he wished to try again with the nasogastric tube we should contact the hospital again. This I did a week later having tried my best to feed him up but with no weight gain.

    The tube was eventually inserted then came out twice over a period of 5 days. As swallowing had become easier, my husband had started eating more so it was decided not to try to replace the tube. It seems the swallowing became easier at the same time as the neuropathic pain in his legs eased off so would this have been because of the introduction of Gabapentin? But he's on a small dose of just 50mg twice daily.

    During this second time in hospital my husband lost another kg then remained the same. He was there for 13 days. Since coming home 11 days ago, he's in bed and sleeping most of the time. He gets up for dinner and then watches TV for a while but finds it exhausting not to be in bed. He has gained almost 2.5 lbs at home so far. It's a pleasure to see him eat again. I just hope it lasts.
    Forgot to say over the last couple of years he's had 4 falls and seems to have difficukty clearing his throat. To me, his voice is more gravelly.

    So this is why I'm 'worriedwife'. I am pleased to have found this forum.

    I can understand why you're a Worried Wife for sure.

    Sorry to hear of your husband's woes, it must be a frightening time for you both.

    Did he have respiratory tests done and was he seen by an ENT on either of his hospital admissions? (ENT given the NG insertion was so painful)

    Losing 20kg would zap his energy but his symptoms are indeed worrying. The only good thing is that with Bulbar onset ALS/MND, the swallow function wouldn't get better to such a large degree - if he were in less pain, for example, he may have more energy to focus on his swallow and it could become a bit easier. Did he / does he cough or choke on swallowing?

    And the reason he saw the Gastro 18 months ago - has that been ruled out as a contributing factor?

    I hope he saw a Dietitian and has an eating plan, including prescribed high calorie nutrition drinks if necessary.

    I hope it is not an MND and wish him all the best for the upcoming tests.

    Take care,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Thank you, Ellie. Husband has been seen by ENT and all possibilities other than neuro seem to have been ruled out but he hasn't had respiratory tests. It's encouraging what you say about Bulbar onset. It certainly was an amazing surprise when his appetite and ability to eat returned. He has never coughed or choked on swallowing. Yes, we saw a dietician before leaving hospital and my husband has at least 2 of the nutrition drinks a day on top of high protein/calorie diet.

      Thank you for your good wishes. It will be a relief to find out what's going on.


        I really hope that they get to the bottom of it, what a worry for you x


          Thank you for your message, shrew. To update, the MRI showed my husband has had 3 strokes which we didn't know about and there are several Alzheimer's indicators. So I'm still worried wife but no longer about mnd. My best wishes to everyone who has to cope with these dreadful illnesses.


            Sorry you're still a worried wife but thanks for letting us know about the MRI.

            Hopefully now your husband is home he might begin to put on weight, which will him him regain some strength.

            He is lucky to have you to look after him.
            Love Debbie x


              Thanks for the update and take care worriedwife. Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.


                I am sorry to hear that, Worried Wife - thank you for letting us know even though I'm sure your mind was all over the place.

                Now you have answers, I hope your husband gets appropriate care and treatment.

                Best wishes to you both.

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                  Worried wife
                  So sorry to hear your news. It’s good to have answers though and I hope now your husband gets the care and treatment which he needs and that you get all the support you need too.
                  Big hugs sent