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Thread: Symtoms of MND to help Newbies.

  1. #1
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    Symtoms of MND to help Newbies.

    I thought I would start this thread and hopefully people will add their journey or their loved ones journey with this horrible MND. My reason is, when I first joined this forum in September 2014, I needed somebody to give me an idea of how my Husbands MND might progress. I soon came to realise that everyone was different. However, my husband never did follow the path I expected MND to take him down. I am not sure, but I think my husband had respiratory onset MND. But I will tell you his symtoms, as I have not come across anyone on the forum with similar symtoms, however there was no doubt it was MND.
    He started with Frontal Dementia about 2009, however it was only finally diagnosed by a Neurologist in July 2014. He was also sent for several tests and in September we were given the devastating news that he also had MND.
    He had lost quite a lot of weight in the previous 18 months, this was accompanied by muscle wasting in his arms, shoulders and chest area. His hands were webbed and there were hollows in between his thumb and finger on both hands. The Neurologist noticed in July he had Fasciculations all over his arms and legs. He was also starting to use his shoulder muscles to help him breathe.
    From then onwards he went gradually worse, his breathing being the main thing affected and also difficulty fastening shirt buttons etc.
    We were expecting him to lose the use of his legs, hands, we expected his speech to deteriorate and his swallowing to be affected as it has with many on here. It never happened, he was able to walk, talk, swallow, right up until the time he passed away. his respiratory muscles just stopped working and that was it. So here you have a journey told about an MND sufferer very different from many on here, but never the less MND.
    I hope this helps someone.

    springtime.
    Evil triumphs when good men stand by and do nothing.

  2. #2
    Forum Member Steve's Avatar
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    Mine started in my hands and throat. i kept dropping things like keys and was getting cramps in the bottom of my mouth, it felt like i was chewing toffee when i tried to talk. it followed that pattern for 6 months and then in the next 6 months it went after my legs, from crutch to chair.

    i was in a chair full time after the first year, that for me was the most aggressive stage. since then although things have got slowly worse it's not at the same pace.

    i have a bipap but don't use it as my blood gas is steady at around 5, i don't get headaches and sleep well.

    i am 2 1/2 yrs into als.

    *sorry about no caps, my eyegaze keyboard isn't working

  3. #3
    Forum Member Nettie B's Avatar
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    My husband's took a strange route too, I think. It started with slurred speech mainly in the evenings to start with. It slowly included the afternoons then all day. Difficulty drinking fluids was developing along side this, then difficulty with swallowing food. When the voice had virtually gone his swallowing became very difficult too so had a PEG fitted so he could be fed artificially. So far a typical Bulbar presentation.
    Then out of the blue, he started to get mobility problems. He described his legs as feeling like lead and started to need walking aids especially as he had suffered a couple of falls. By this time he had lost the ability to pick up a pen or pencil. He had been using an iPad with a speech app for a while and could still do that.
    Next came, along with increasing difficultly in using his hands, neck drop. He could only look at the floor from them on unless he wore a special neck support. He needed several diffent ones as things professed but gave up on them about a month before before he died. His chest muscles weakened very quickly once they started. (He had used Non Invasive Ventilation for a few hours a day for 6 months or so. Eventually Trevor died in his sleep, peacefully, when his breathing became too shallow to sustain him. He had been incredibly brave and determined throughout but his peaceful end was nothing more than a blessed release ... 13 months after diagnosis, 18 months after first symptons.
    So I think this was a strange route ... starting at the top then jumping to the lower limbs then to the upper limbs then back down to the chest! I certainly wasn't expecting him to have mobility problems at all. Maybe I was naive.
    It would be interesting to know if others are taking this route.
    X Nettie

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    Nettie, my Bulbar is similar to that of your Trevor's. I started with slurred speech, then difficulty swallowing (I can only manage thickened liquids now, but they make me choke occasionally). Then mobility started going, I can stand if I lean on my frame but can only manage a few steps as my toes curl under and I fall if not careful. My arms have limited movement but, please God, my fingers still operate and I can't bear the thought of not 'talking' to my friends via the iPad. I now have neck droop when I stand up, but can just about hold my head up while sitting up in wheelchair. I hate the neck collar, it makes me claustrophobic. The main thing about the droop is the ache across the shoulders and the teeth cleaning ritual. If anyone else with neck droop has tips for cleaning teeth, please share! Although I've been an asthmatic for the past 50 years, my breathing, so far, isn't too bad. I still don't need breathing aids. I've been sleeping in the riser chair for the past fortnight, but the OT is arranging a hoist and other equipment so I can get back in bed. I feel really frightened sometimes but mostly I want it to hurry up and finish. This damn disease has no mercy, and although we all try to be brave, deep down we want out. I don't want to put my husband through this hell for too long,he s already exhausted as it is. I'm waiting for S.Services to arrange help to get me washed or showered and dressed in the mornings but it's a long time coming. Thank you for your posts, Nettie, I am one of those who wants to know what to expect, and you've helped me enormously. Keep strong in your grief. Thinking of you. Love Rainey x

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    Well I haven't been diagnosed yet but the odd numb feeling in my ankles has travelled up my legs and now is in my knees together with fasciculations so I guess I know what the outcome will be. My nerve conduction tests were abnormal too but waiting for another appointment with the Consultant. I simply don't know what I will do, living on my own with no close family. Just to think last year I was playing tennis. I am going to ask my doctor on Monday if he will refer me to the Hallamshire because the waiting for different appointments at Pinderfields has been abysmal. It doesn't help either when I ring the secretary up or write to my consultant about an early appointment. AS of yet I have not had any reply.

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    Forum Member Nettie B's Avatar
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    Keep up the pressure Rosewall. Emphasise that you live alone. You must be so worried and additional stress doesn't help you any! I found the secretary route the best when I was pushing for Trevor (as he couldn't speak) but I suppose it depends on your local set up.

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    Rosewall, my husband has had symptons for two years, told he had ALS in November 2014 and then in March this year was told by Neurologist that he was not convinced. We were advised on here to have a second opinion and recommended to Hallamshire, I telephoned the P.A. For Dame Prof.Pamela Shaw, I was told to get a referral letter off our GP, within 24 hrs of them receiving referral an appointment was made for 6th May. Please do not put off phoning Hallamshire the sooner you do the sooner you will be in the hands of people who appreciate and understand what you are going through. Good luck Pam S x

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    Thanks Pam, I already have phoned up Hallamshire and Erica Waines the PA said that I need a referral from my doctor but preferably the neurologist with the results of my nerve conduction test. I have written to the neurologist, Dr Butterworth at Pinderfields but have heard nothing so I will try the GP route tomorrow. I do have a brilliant GP who is spanish and as I speak spanish myself we do get on famously so I do hope that he will refer me himself. I shall also phone the secretary of Dr Butterworth up again to ask when my next appointment will be.
    Thanks for your reply
    John

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    hello, John. I am under the care of Professor Dame Pamela Shaw at Sheffield Royal Hallamshire Hospital and we cant praise them enough. They have taken such good care of me. I hope you get it sorted out. Wheels always seem to turn slowly when you are awaiting diagnosis. I can still remember the anxieties I had. Somehow, don't ask me how or why, but the pressure seems to subside once she said I had bulbar onset MND. Perhaps because in my heart I knew that the MND family would fold its arms around me - and that has been the case! Much love Joycie xx

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    Thank you Joycie. I was very depressed yesterday because the feeling had gone up to my knees and I began to wonder how I would cope living on my own in a house with stairs. I have always been so independent and very athletic playing many sports. The future seems a black hole to me at the moment. AT least if I was given the diagnosis I would know and would stop these futile searches I make on the internet trying to find some little scrap of hope. When I had my nerve conduction test the physiologist said that my reflexes were diminished in the legs and with MND they are rather brisk. But I read on the internet yesterday that the reflexes are only brisk when the muscle has died altogether so that set me back quite a lot.
    John xx

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