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  • Beemer
    replied
    Hi Paul, welcome.
    I have answered your pm.

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  • Shepster34
    replied
    Oh wow.

    So i joined here 2 years ago when i started with symptoms to browse what symptoms other people were having. I'd forgotten the username and rejoined a few days ago. So on my ipad ive must have logged in as the old one from 2 years ago. I'll log out the ipad, many appologies.

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  • GaryM
    replied
    I'm confused now there's a Shepster and a Shepster34 both contributing to this thread. Are you related?

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  • Suefromwakey
    replied
    No Shepster he has been diagnosed with PMA which is a rarer form of Motor Neurone Disease, from what I can gather its a slower progression but the end is the same. He has practically no weight loss although I can see his muscle loss in the legs...........he eats, speaks and drinks his beer as normal

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  • GaryM
    replied
    Hi Paul. Your weight loss might be more due to worry than any potential effects of illness. My symptoms started just over 18 months ago. My left arm has had no function for over a year, right arm is about 50% gone, left leg getting weaker and thinner, but I've hardly lost any weight until the last few weeks when I've had more problems swallowing. Aim for high calorie food like fats (cheese, chips, fried food, puddings). All the things we've been told to cut down on for years.

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  • Shepster
    replied
    Hi Sue

    Has he been diagnosed with als?
    its been over 2 years when I first started with weakness in my arm and legs. Things went slow, I didn’t have wastage back then. I also had an emg 2 years ago but it was normal but I think it was done wrong or too early.

    My right arm is the worst limb. I get pains around my shoulder, bicep and elbow when I use my right arm. My grip is ok. No wastage in that thumb muscle. I even get pains in my wrist when I twist it. The actual wastage didn’t hurt it’s the weakness it has left afterwards.

    my neuro states I have no umn signs only lmn signs so it wouldn’t be als, it would be pma if my next emg is abnormal and points to mnd.

    How is your husbands weight? I’ve now lost 1.5 stones and weight is dropping off me since Christmas. I’m eating whenever I can and still losing. I’ve heard mnd does this. I’m skin and bone all over. Not just my limbs I’ve lost weight in my back shoulder chest neck and buttocks.

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  • Suefromwakey
    replied
    Paul you say your awaiting diagnosis - my husband got his this week - he'd waited about 2 years.......everybody it appears is different.

    He has very little leg movement but his arms are ok and he's not suffered depression - he was always a stubborn git so perhaps that's playing for him right now.

    From the diagnosis on Thursday which was in Seacroft, Leeds - various other things will now kick in for him so no doubt when you eventually get yours the same will happen.

    Apart from the physical practicalities there is to be conversation around whats going to happen to him over the coming months and I as his carer will be involved in that.

    Because my husband took so long over getting diagnosed and the thought that no one knew of us - not even his Dr to be honest - I took the bull by the horns and "Self Referred" him - google it - it worked a treat and absolutely no end of aids and equipment were supplied by the local council and at least we are now on various "Lists", it was the feeling of isolation that was getting to me.

    I hope that you don't have to wait as long as he did for the final diagnosis

    Sue


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  • Shepster34
    replied
    Wish i could say the same. Its not so much death that bothers me its the lead up. Im scared stiff of being locked in and also being a total burden on my family.

    the worst bit is i know its my arms that are weakening the most and that scares me the most. Its no good me having legs if i can move my arms.

    Ive rang mnda for support and they were great but its the depression that im in. I guess at the moment i just cant accept it.
    Last edited by Shepster34; 13 February 2021, 02:03.

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  • matthew55
    replied
    I focus on what I can do and not about what I've lost. Oh and death doesn't bother me 😁x

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  • Shepster34
    replied
    Originally posted by matthew55 View Post
    Welcome to our band of brothers and sisters. In my previous life I was 17st. Today I weigh 10st. It is what it is. 😁x
    Cheers mate. Yes im 2 stone down from my normal weight.

    How do you all cope with the depression. All i can think about is losing my arms.

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  • matthew55
    replied
    Welcome to our band of brothers and sisters. In my previous life I was 17st. Today I weigh 10st. It is what it is. 😁x

    Leave a comment:


  • Shepster34
    started a topic New here from yorkshire

    New here from yorkshire

    Hi im Paul from Yorkshire

    awaiting diagnosis

    Ive done another post in the mnd connect section about my symptoms so i'll not repeat myself

    Currently struggling with it all, very depressed and found out i also have a small air ways restriction in my lungs pribably pulmonary fibrosis. I need more tests to confirm diagnosis. Biopsy most likely.

    The mad thing is i may have mnd and ipf, both terminal in their own way and because im not diagnosed in either, i cant get a vaccine. Ive rang the hospital and rang my gp, both said nothing they can do until confirmed diagnosis.

    Im currently shielding with my wife (she has no immunity due to medication) and im working from home. Dreading Boris ending lockdown as my wife will need to go back to work in a shop and the possibility of bringing covid home. Shes gets her vaccination tomorrow.

    Anyhow, if you fancy a read of what happening to me its in the other section. Its not good and my right arm is fading fast. Although my grip is strong my right arm is very weak and quite painful. The speed im losing weight is worrying. Im nearly losing a pound a day this week. I dont get it. Im eating
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