Announcement

Collapse
No announcement yet.

fasiculations

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • kevin
    replied
    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

    Leave a comment:


  • Zebedee
    replied
    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.

    Leave a comment:


  • MNDConnect
    replied
    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

    Leave a comment:


  • Guest's Avatar
    Guest replied
    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

    Leave a comment:


  • MNDConnect
    replied
    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

    Leave a comment:


  • kevin
    replied
    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

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi Kevin
    That's a long time with bulbar, I hope I'm the same as you.
    How are you doing.
    Mags x

    Leave a comment:


  • Terry
    replied
    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

    Leave a comment:


  • kevin
    replied
    hi Terry
    do you have PLS.

    I got dignosed bullbar onset . Its 5 1/2 years since i got symptoms and i am doing well . i asked last visit with consultant have i PLS He said no bulbar onset everyone is different.

    very strange thing MND

    Kevin

    Leave a comment:


  • Terry
    replied
    Hi Emma;

    I'm similar to Kevin, in that I get a few in certain places from time to time.

    I do hope they go away, they do sometimes.

    Love Terry

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi Mags
    4 months has been long enough - 3 years must be horrid. xx

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Or adults! My twitches have always been shy when doctors have wanted to see them and one neurologist laughed at me because he thought I had invented them by looking on the internet! He has since been sacked and I am with another neurone who believes me.

    QUOTE=Barry52;72412]Hi EmmaG

    My granddaughter gets the giggles when she sees the back of my hands rippling. You have got to see the funny side when dealing with children.

    Barry[/QUOTE]

    Leave a comment:


  • Barry52
    replied
    Hi EmmaG,

    My granddaughter gets the giggles when she sees the back of my hands rippling. You have got to see the funny side when dealing with children.

    Barry

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Thank you! I find them fascinating at the same time!
    Originally posted by njm View Post
    EmmaG:
    The twitches are your motor nerves trying to enervate your muscles. I taught myself to reframe them as a positive thing. Positive in that they are still reaching the muscles, albeit erratically. When they stop it indicates that the nerve impulses have died out. I have come to see my twitches as a sign my muscles have not atrophied entirely.
    Charles

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi Emma
    I've had faculations for 3 years and they have never stopped for a minute. Now, they are like huge ripples. I've tried backofen, quinine and clonazipam, they didn't work for me. That don't mean it won't work for you Emma. I know you have to build up to a high dose on most of these drugs.

    Mags x

    Leave a comment:

Working...
X