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Thread: fasiculations

  1. #11
    Forum Member Terry's Avatar
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    Hi Kevin;

    Mainly PLS but a bit ALS as well.

    My EMG person said that I could have MND but they also said that it was a slow one.

    My first specialist said ALS and the second opinion said mainly upper neurons (PLS) involved.

    I'm not doing so well but better than 95% of people diagnosed.

    Count your blessings.

    Love 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.

  2. #12
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    Hi Kevin
    That's a long time with bulbar, I hope I'm the same as you.
    How are you doing.
    Mags x

  3. #13
    Forum Member kevin's Avatar
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    Hi Mags and Terry
    I am the third in our family to have mnd in last 20 years so I knew it well . Another strange fact we shared no blood . So I very much know how lucky I am .
    I swim twice a week and ride a bike my hands and arms are strong . Well in truth the only people who think I am lucky are on this site . My mum is 90 and I wish I walked as good as her .
    I know it makes no difference you got what you got but I was sure he was going to say PLS . It's the what comes next thing this could all end tomorrow PLS is the get out of jail card

  4. #14
    Forum Moderator MNDConnect's Avatar
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    Quote Originally Posted by EmmaG View Post
    Hi. I have had fasciculation for over 4 months. They are constant and all over the body. My physio says that they will be causing my fatigue. My neurologist prescribed Quinine 4 weeks ago but there has been no improvement. I spoke to him yesterday and he suggested that I increase the dose and wait a bit longer. He also said
    I would always have the twitches anyway. Does anyone else have similar issues? They are a constant and disturbing symptom.
    Hi Emma

    As the others have mentioned, there are various medications which can help with fasiculations. If you try the higher dose of Quinine and this still does not help then it may be worth speaking to your neurologist or GP and asking them to try a different medication, especially if you are finding the fasiculations to be disturbing.

    Fasiculations generally fade over time although this can differ from person to person.

    Best Wishes

    Rachel
    MND Connect

  5. #15
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    Hi Rachael
    I've had faciculatios for over three years, they were my very first symptom. They have never stopped. The past year, in my legs especially, they are huge ripples, people see them from the other side of the room. I've tried several meds, that don't work including quinine.
    Is it worth me asking for more drugs to,try? Because they never stop.
    Many thanks
    Mags

  6. #16
    Forum Moderator MNDConnect's Avatar
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    Quote Originally Posted by mags55 View Post
    Hi Rachael
    I've had faciculatios for over three years, they were my very first symptom. They have never stopped. The past year, in my legs especially, they are huge ripples, people see them from the other side of the room. I've tried several meds, that don't work including quinine.
    Is it worth me asking for more drugs to,try? Because they never stop.
    Many thanks
    Mags
    Hi Mags

    If the fasiculations are bothering you then it is certainly worth speaking to either your neurologist or your GP to ask to try a different medication. It can take a bit of trial and error in finding the right medication at the right dose to improve the fasiculations.

    Best wishes

    Rachel
    MND Connect

  7. #17
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    Hello Kevin,

    I just want to say that it is possible to have Bulbar Onset PLS. My husband has this as a tentative diagnosis as, so far, he has no LMN damage.

    i wish you all the best.

    Zeb.

  8. #18
    Forum Member kevin's Avatar
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    Hi Zeb
    So every classification of mnd has a pls equivalent . MND has no definitive test they test for everything else if you ain't got that you have MND . When you look at it that way it shows how little they know .
    Thanks for info zeb it's so nice to have a possible.

    Kevin

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