Viewing 5 posts - 21 through 25 (of 25 total)
  • #78647
    Re: Petrified (more than he is) about muscle biopsy

    Hi to you. I am new to this group but if you have questions you would like answers to then write them down on paper and when you have the next appointment take it with you and aske the experts. I did just that and don’t be embarresed about the questions they expect it most of the time. they will be able to tell you if it will affect your children you know that sort of question.I don’t know much about LGMD but i do know about DMD my 2 sons had and i know that it is a defective gene on the X chromesone which is passed on by the female. So please stay posertive and ask the questions you need to know and enjoy your life together and i realy hope you can enjoy the feeling of motherhood best wishes to you both my name is Richard.

    recoveryman
    Participant
    Posts: 12
    Joined: 27/07/2011
    #78648
    Re: Petrified (more than he is) about muscle biopsy

    Hi Richard,

    Thanks for your advice. Don’t worry, every time my partner is off to the doctor, he always knows exactly what he wants to ask and nothing is off limits. And we have also found it very helpful for me to be there too, as sometimes he may want to ask a question and he doesn’t know quite how to phrase it, but I do, or alternatively, the doctor or specialist is telling him something and he doesn’t quite absorb all the information but I do.

    This has been the case in the last 2 weeks with a visit to the cardiologist, and him being placed on some new medication (do you remember why I’m taking this medication??) and the sleep specialist where he was trying to ask if going on ventilation at night would make his lungs lazy, but he couldn’t quite get his point across so I had to rephrase the question and he said that was exactly what he meant.

    The thing is, it’s all well and good to have questions to ask the doctor/ specialist, but it’s frustrating when they don’t have the answers. The last few months have been a complete whirlwind for the two of us, between muscle biopsies coming back inconclusive, being told that he needs ventilation at night after a sleep study, and then being told that he has abnormal ECG results and so forth. Add to that my other difficulties at work with my coordinator not allowing me to take afternoons off to take him to appointments “why can’t someone else take him” “you’re not his carer, his dad is, tell him to take him to the appointments” “no you’re not his carer, you’re not married and you don’t live together”.

    But that’s a topic for another day…

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78649
    Re: Petrified (more than he is) about muscle biopsy

    Hello angelic princess it’s me again. Regarding the ventilation, I have or did have 2 sons with DMD and the eldest one was told he needed overnight ventilation which we proceeded with at first it was a great help he slept better and he suffered less with headaches and furtige (by the way my spelling is not very good) he used it just over night at first then after a few months he started to ask for it to be left on longer and longer untill he was useing it 24 hrs a day.That is a DMD sufferer i’m not sure how it would affect your partener but befor you go ahead with it research it as much as you can, it will help him to start with no doughts about that but my son became dependent on it it’s not totally a bad thing but it does give you limitations.best of luck to you both.

    recoveryman
    Participant
    Posts: 12
    Joined: 27/07/2011
    #78650
    Re: Petrified (more than he is) about muscle biopsy

    Hi Richard,

    My partner had a sleep study done about 5 years ago at one of our public hospitals, and there was apparently no cause to do anything about his sleep.

    We were then referred to a different public hospital this year to a sleep specialist that my partner’s neurologist recommended, went to see the specialist and had a blood gases test the same day. His daytime CO2 level was raised significantly, so they booked him in for a sleep study. The following week he was booked in for a muscle biopsy which we undertook, then suffered the consequences, including an inability for his care workers to use the hoist (due to the pain and the location of the scar being exactly where the sling would be located on his leg), meaning either his dad or I had to be there for every service to lift transfer him between bed/wheelchair/commode chair.

    The day that he was due to have the sleep study, we finally got the results from the biopsy, still inconclusive.

    So that night he probably didn’t sleep the best anyway, but they got enough REM sleep to note that his oxygen and breathing levels dropped significantly enough to need to do something about it soon, but not immediately.

    I guess my main point would be that as his carbon dioxide levels, his body will slowly compensate for the higher levels, and it won’t do him any good. It would be best for him to have the appropriate levels of oxygen all night, which will really only be achieved by ventilation. His diaphragm just isn’t working like it should be. He will also be given some exercises to try and maintain the diaphragm’s strength, but I’m sure he will do his research first. As will I.

    Thanks for sharing your experiences with your sons.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78651
    Re: Petrified (more than he is) about muscle biopsy

    Hi AngelicPrincess,
    I’m struggling with pain and fatigue today so I hope what I write makes sense.
    I think you were saying that you think your partner would benefit from nocturnal ventilation now and to not wait until your doctor says so.
    I also had a muscle biopsy about 2 years ago and still don’t have a definate diagnosis even though genetic tests are ongoing up in Newcastle. I know they are doing all that they can but it is still very frustrating.
    I had a sleep study almost 2 years ago and Dr Schneerson in Papworth said that my CO2 levels were slightly high during sleep but that I didn’t need nightime ventilation at that point and that they would do another sleep study 3 months later. I was having all sorts of problems with fragmented sleep, difficulty breathing during day and night and chronic headaches. I didn’t believe him. On someone’s recommendation I got an appointment about 6 weeks later with Dr Anita Simonds at the Brompton who agreed that enough testing had been done and that it was very reasonable indeed to do a trial of night-time ventillation. I have used it from that point and whilst my health is still very poor it helps enormously.
    I think in this case as in many others it’s always a good idea to get another opinion if you think someone may be wrong. Your GP should refer you to a different specialist if you think you need it.
    Good luck,
    Michael

    michaelmcd20
    Participant
    Posts: 87
    Joined: 12/09/2010
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