Trevor

Your Replies

  • Trevor
    March 7, 2017 at 1:52 am

    Hi – if she’s able to watch tv and listen to music that’s really good. I could do only this for months but eventually I recovered – it took a year so there is a lot of hope.
    They said there was nothing they could do but just to wait to get better . I did eventually have some steroids prednisilone whereby I made immediate improvements . They are unsure of whether this drug was responsible or that it was just coincidence since GBS should not normally respond in this way. So mention this to the docs ….good luck

    Trevor
    September 29, 2016 at 11:44 am

    Hi

    Prednisone has worked or at least it seems that way. Several days after starting on 40mils my eyes became easier and moved left and right , my tongue moved right round my mouth and my swallow started to improve.
    This brings up a question no one can answer ???
    The steroids should not work if I have GBS or MFS as they have said all along . These diagnosis do not respond – unless the improvement is merely coincidental then it’s not GBS st all !!!
    So I ask what have I got ??
    Please can anyone advise ?

    Trevor
    August 16, 2016 at 4:06 am

    Many thanks I’ve made contact as suggested

    Trevor
    August 11, 2016 at 12:45 pm

    How did you get the double vision to improve ? I have DV only now when I move my eyes to far right or far left

    Trevor
    August 11, 2016 at 12:24 pm

    My eyes are moving since i started prednisone . Double vision is still there when I turn them to the full right or left and that’s something I want to improve. Any thoughts would be good … I’ve been suggested to see a vestibular physio and I’m following that line now to get an appointment.
    My speech has improved but I’m not sure if it’s the vocal cords moving or the muscles compensating – I’m seeking a flouroscopy to see

    Trevor
    August 11, 2016 at 12:13 pm

    My eyes move left and right now since the prednisone rather than being stuck like an owls .
    However at the far right and left my vision is double / any advice on how to improve this please ?

    Trevor
    August 8, 2016 at 7:47 am

    Great that is very useful I will investigate many thanks

    Trevor
    August 5, 2016 at 3:18 am

    Many thanks nurse Noel – I see there are three centres in the UK – I will investigate further. I’ve already been to two hospitals to seek opinions with no real success so this is very helpful

    Trevor
    August 2, 2016 at 3:29 pm

    Many thanks / the doctors didn’t find evidence of GBS or MFS when they looked at the blood test results or lumber puncture.
    The second one prescribed pred as he thought as a long shot it might be Canomad – he was surprised that my eyes had improved in terms of their movement within two days but scratched his head a bit since this treatment shouldn’t work if it is actually GBS !
    At the moment I have double vision although my eyes do move now along with vocal cord paralysis and some face paralysis .
    It’s do difficult to know which way to turn after 8 months