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  • #73735
    And on top of that…

    So the “results” came back from the biopsy.. and the next day he was booked in for a sleep study.. only performed because of raised CO2 in blood gases test (oxygen perfectly fine, just raised carbon dioxide).

    He had trouble getting to sleep, but they got what they needed from the test..

    And this morning we were told that his breathing is dropping to a very shallow rate in REM sleep and that he requires.. that word.. ventilation.

    Between not knowing what type of MD he has and now finding this out, it’s doing our head in. We have to apply to the equipment pool for a BiPap machine it seems.. and could take over a year to be approved.

    Poor thing.. I really feel for him, yet he stays so positive. We have to try and see this as a positive thing for his ongoing long term health.. but it’s not easy!!!

    Thanks for your support everyone.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #80633
    Re: And on top of that…

    @angelicprincess wrote:

    but they got what they needed from the test..

    Between not knowing what type of MD he has and now finding this out, it’s doing our head in. We have to apply to the equipment pool for a BiPap machine it seems.. and could take over a year to be approved.

    Poor thing.. I really feel for him, yet he stays so positive. We have to try and see this as a positive thing for his ongoing long term health.. but it’s not easy!!!

    Thanks for your support everyone.

    Again it is a worrying time.

    It will “do your head in”, to a certain extent having so much information
    thrown at you then to have these “false starts”.

    From what you have posted the specialists seem to be doing all the logical steps.

    Staying positive is good. The worst you can do is decide yourself that things
    are worse than they are. Many of these Neuromuscular conditions are very variable
    indeed. After early “flareups”, some develope very slowly indeed and never
    cause major problems. Some just “plateau” and stop for decades at a time. You
    might well be one of these.

    Make the specialists aware of how worried you are. See if there
    is a Neuromuscular Advisor in your area who could devote more
    time than your Consultant (see MDC mian site for these advisors).

    See the other threads of ventilation, we have lots of expert posters
    on these subjects.

    It might not seem like it but you are making progress all the time.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
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