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  • Shepster34
    replied
    Originally posted by matthew55 View Post
    Symptoms start Jan 2020 diagnosis May 2020. If it looks like a duck, walks like a duck.... 😁x
    Sorry for the diagnosis mate, Your neuro did well finding it so quickly.
    I actually had an emg 6 months after my first symptoms but it was a poor test. He tested 1 leg muscle and 1 arm muscle. I was in and out in no time.
    To be fair i don’t think I had any wastage at that point, maybe it was too early.
    he asked me if I had sciatica which I thought was a strange thing to ask. Maybe he found the beginnings of my mnd but she said it was normal.

    i never saw any results, just my doc stating normal.
    Last edited by Shepster34; 16 February 2021, 22:10.

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  • matthew55
    replied
    Symptoms start Jan 2020 diagnosis May 2020. If it looks like a duck, walks like a duck.... 😁x

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  • Shepster34
    replied
    Originally posted by matthew55 View Post
    I've had them in my upper arms from day one. One year on and I'm weaker but not yet helpless. MND is indeed a path but it twists and turns so much that no one knows where it leads. 😁x
    Thanks Matthew

    are you one year on from diagnosis or start of symptoms?
    Strange I haven’t felt any Fasciculations. I do however have bad tremors internally and in my hands. I haven’t read about this being a symptom but it may be because of my weak muscles.

    ive been trying to get diagnosed for so long.

    my neuro keeps telling me I would be much worse than I am by now if it was als but my limbs have become much weaker and thinner this past year. Just no failure yet.

    im due an emg in March. I’m currently shielding with my wife so very worried about going for it in a hospital. Part of me wants to cancel but the other half needs to know if I have als.

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  • matthew55
    replied
    I've had them in my upper arms from day one. One year on and I'm weaker but not yet helpless. MND is indeed a path but it twists and turns so much that no one knows where it leads. 😁x

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  • Shepster34
    replied
    Could i ask a question. I keep seeing fasciculations are a symptom, other sites say not. But how many of you actually didnt have any fasciculations in the first few years of your journey? I dont have any yet and have had symptoms for at least 18 months maybe 2.5 years when i first felt a little weaker in my legs.

    Or are fasciculations a later symptom once the muscles have started wasting badly?

    I cant work out if it is a good sign i dont have any or if it doesnt mean anything?
    Last edited by Shepster34; 16 February 2021, 19:18.

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  • Shepster34
    replied
    Originally posted by Ellie View Post
    Huh??? I would not have written it if it were untrue...
    Apologies, i wasnt questioning you it was more of a shocked comment. Lots of them were stating categorically it was fibrillations i was feeling.

    i need to stay off that bloody group. It sent me in a big anxiety spiral.

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  • Suefromwakey
    replied
    social media clap trap !! showing me age

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  • matthew55
    replied
    Facebook is for fun not facts 😁x

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  • Ellie
    replied
    Originally posted by Shepster34 View Post
    Is that true.
    Huh??? I would not have written it if it were untrue...

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  • Shepster34
    replied
    Originally posted by Ellie View Post
    That is impossible to know. Fibrilations simply cannot be felt.
    Is that true. Ok, the people on fb mnd group said thats what i was feeling. I guess it must be just internal tremors then.

    thank you. It may be my anxiety.

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  • jd58
    replied
    Welcome to our community forum Paul

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  • Ellie
    replied
    Originally posted by Shepster34 View Post
    ... but I have fibrillations going on all night in bed
    That is impossible to know. Fibrilations simply cannot be felt.

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  • Bowler
    replied
    Originally posted by Beemer View Post

    My wife did something similar Sue, in getting me to see a specialist, she used her Westfield Health Insurance, which allowed her to get me an initial appointment with a private doctor. The private doctor was a professor of neurology, and after his examination (the following day) he wanted to see me again. I had no health insurance (I had cancelled it the year previous) so had to go NHS, but everything took off quite quickly from then on.
    Same here. We paid for private consultation and yes like you we then saw the same consultant within the nhs a few weeks later. I know it’s wrong to jump the queue but desperate times sometimes call for desperate measures 😔

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  • Beemer
    replied
    Originally posted by Suefromwakey View Post

    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

    My wife did something similar Sue, in getting me to see a specialist, she used her Westfield Health Insurance, which allowed her to get me an initial appointment with a private doctor. The private doctor was a professor of neurology, and after his examination (the following day) he wanted to see me again. I had no health insurance (I had cancelled it the year previous) so had to go NHS, but everything took off quite quickly from then on.

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  • Shepster34
    replied
    Originally posted by Suefromwakey View Post
    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
    Mine is suspected pma as I have no umn signs, just lmn, according to my neuro. Although he did say that can change later. The biggest difference according to him is als usually have brisk reflex’s. Mine are absent in both ankles and biceps. But I wonder how many he has actually dealt with? Mnd is so rare and he’s only a normal neuro.

    I know we are all different but mine is very atypical. I had mainly weakness in 2 legs and 1 arm for the first year, then I noticed more wastage everywhere last year without getting much weaker. Now these last 2 months I’ve accelerated in everything. Weight loss at nearly a pound a day on some days, much weaker in my right arm and much more wastage see; in the right arm compared to the left. Up until Christmas they were very much on a par. up until Christmas I would have said I had weakness in all limbs and wasting in 3 of my limbs and not just one, but 2021 it’s all been about this right arm.

    i don’t suffer from any fasciculations whatsoever, but I have fibrillations going on all night in bed, that buzzing feeling in my arms and legs. Like an internal tremor. My wife says she can’t feel it but I can.

    but the biggest difference is pain in my right arm. I only get pain when I move it, it’s not cramp. Even just twirling my wrist around causes pain in my forearm, bending my elbow without holding anything causes pain in my bicep and elbow area, lifting my arm up causes an aching in my shoulder. I can move the arm at full speed although the weakness means it feels very heavy, but it’s the pain stopping me doing most things. So much for no pain until later stages.
    Last edited by Shepster34; 14 February 2021, 10:02.

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