miracle77

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Viewing 20 posts - 1 through 20 (of 224 total)
  • #97141
    Re: Just Joined

    Welcome to the forum. Hope you find it friendly, useful and supportive.

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #97129
    Re: Important information: New forum launching

    Great…look forward to seeing the changes

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #97081
    Re: Hi

    hello and welcome to the forum. Hope it find it helpful and us all friendly and welcoming.

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #96763
    Re: Fatigue/excessive sleepiness

    Hi Cassini,

    Can I suggest you ask for a sleep breathing assessment. Muscle conditions can also affect your lungs or muscles around them such as the diaphragm. Symptoms can include daytime sleepiness, waking up un-refreshed from sleep, morning headaches, hungover feeling to name a few. Ask GP for referral to Respiratory and if already seen there mention symptoms. If you think it will he,p you could all take a copy of an Epworth score….you will find it on google.

    Good luck

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #97039
    Re: Hi

    Hello & Welcome to the Forum :-)

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #96733
    Re: Changing vent settings & when

    Did an epworth scale myself online and my score has gone up. Don’t have Tosca result yet but should know this week. On this occasion I think it’s me and not the machine. Last time it was machine and I kept telling them to no avail this time around I have a different doc who I get on well with and I believe will listen to me. Don’t tell myself just now. Waking less then refreshed in am, morning headaches, daytime sleepiness and falling asleep inappropriately. Machine in the same place it’s always been.

    Fingers crossed it’s sorted quick as I’m due surgery and my vent settings need to be optimal

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #96718
    Re: Respiratory Information Video

    Thanks for posting I will watch later. Is this an update on the previous webinar do you know ?

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #96586
    Re: Newcastle referral

    Hi pippa,

    Any developments on going to Newcastle? Well worth a visit compared to seeing a general Neuro. Go with an open mind and a list of all your symptoms. I got referred in 2012 and touch base with centre when ever I feel it necessary and they have been great.they can do tests not offered elsewhere. Good luck

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94905
    Re: Recovery after general anaesthesia for key hole surgery

    Glad I saw this message. Can either of you two ladies tell me about your anaesthetic and your fitness for it.

    I’m needing keyhole surgery under a general anaesthetic which they now wont do as I use BIPAP. The surgeon and anaesthetist feel I shouldnt have it despite saying it was ok. I had to have a spinal anaesthetist earlier in the year for the same reason but was told this would be a general. I’m very upset to be declined op as I’m in pain. Both Neuro and respiratory team feel I’m fit fit procedure and are happy to be involved.

    Do I have rights to appeal decision or have others been in same/similar situation

    Thanks in advance

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94612
    Re: Hot Foot…….???…..

    Hi Taungfox

    How is the pins & needles now? I’ve noticed increasing problems with this over the last 18 months and keep telling myself it’s just my imagination but now I’m convinced it’s not. I’m presuming it is connected to the MD. Made a decision to discuss it at my next Neuro appointment.

    I also wondered whether others had experienced this problem and what did the explanation turn out to be.

    Thanks in advance

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94758
    Re: LOSING WEIGHT !!!

    Hi Cat

    Glad to hear I’m not the only one who gained weight on Pregabalin. I’m loathe to stop as the muscle pain will come back & my mobility will deteriorate. How are finding your symptoms off it, if u don’t mind me asking.

    I’m trying to lose weight through walking and calorie restriction.

    I also have polycystic ovaries but didn’t find I gained lots of weight with it although weight gain can cause it.

    Hope you are well.

    Regards

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94170
    Re: GP Shock Horror……

    If only we could clone good doctors. IM lucky to have an excellent GP who admits to knowing nothing about MD, she largely lets me manage myself and does what I ask. It’s on the system if I phone that she will either see me, phone me or I can get quick appointment with one of the others if she is not around.

    It’s about time they realised we are the experts in our condition as we live with it day in day out.

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94056
    Re: Nerve pain

    Hi Pippa,

    Nerve pain could still be MD related as if they are all linked up. My neuro always asks me about pain and asks me to specific where i.e. is it in nerve, muscle or both.

    Keep pressing for the referral to Newcastle.

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94201
    Re: GO TEAM ORANGE

    Well done to all Team Orange who ran the marathon. A colleague of mine did it in a respectable 4 hrs 20 and raised £4500 in the process with donations still coming in.

    I’m not fit to do that sort of stuff so I’ve signed up to do some bucket collections over the summer.

    Will we find out how much team Orange runners raise in total for the marathon?

    Thanks

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #93171
    Re: You Should Have Patient Held Records….says our CEO..

    Sarah I’m glad you have managed to get each care provider communicating. Its relevant to me too as I’m due to give surgery later in the year and obviously as I have more issues now it’s taking some planning. I insisted that all my consultants be copied in on the correspondence and that I be too and I have liaised with each of them to provide advice on how I should be managed in hospital and any special concerns noted. They probably think I’m bring difficult but I don’t care I want to feel safe & for my procedure to go smoothly.

    Sash did you ever get an appointment sorted?

    Taungfox apologies I haven’t yet posted the link to obtain access to medical records & patients rights. I will post these from work tomorrow.

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94032
    Re: DING DONG IS ATOS REALLY GONE

    Gosh Woogy that’s shocking but not surprising. In my area they are constantly advertising for PIP assessors. I did consider applying but that salary wasn’t great….lol Thanks for sharing

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #94089
    Re: transplants

    If only our dodgy muscles could be transplanted. I have a no of friends who have had transplants and I must admit I did a feel happy for them but was also a bit jealous as they were getting better. I know that’s wrong. Hopefully with all the research thsts being done there will be more help for us soon.

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #93399
    Re: Target MD magazine – special feature on Scotland

    Hi Ruth,

    Thanks for a fab bumper edition of the Target newsletter. I live in Scotland so it was people I know who featured so much more exciting:-)

    Best wishes
    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #93166
    Re: You Should Have Patient Held Records….says our CEO..

    I totally agree with this. I get copies of all my Neuro clinic letters and I’m trying to arrange to get copied into the others. I have obtained access to my health records previously. My GP is also good at giving my copies of letters I’m not copied in on. I think it helps immensely if we are informed about our own health especially when attended A&E or other non related health specialities.

    There is a section in the information pack for adults provided by MDC stating we should get copied into letters etc as we all have complex conditions and should be informed about your own.

    I encourage others to follow my lead.

    I can provide info on how to apply for access to health records etc as I also work for the NHS.

    Good luck

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #93149
    Re: 2000 Topics….

    :D :D :D

    Fab forum with even nicer folks !

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
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