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Thread: PLS and Breathing

  1. #1
    Forum Member Terry's Avatar
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    PLS and Breathing

    Hi Carol;

    I did not feel comfortable posting about breathing on the Rch4 research &trials thread so I've copied it to here:

    Hey Charles

    Thank you so much for your pm

    I had my second opinion back in 2008 at the National Neurology Hospital in Central London. I am terrified of getting worse, and just wanted to know if at this stage pls could change into als.

    I know pls is a slow form, lately I have trouble with my breathing, if I li flat in bed I get out of breath like I have been running. My consultant have been carrying out regular sleep studies which I do at home, but now I am waiting to go into hospital to do a sleep study.

    It's like every couple of years something changes. Do you understand why I am worried?

    Your advise would be appreciated,

    Best Wishes
    Carol

  2. #2
    Forum Member Terry's Avatar
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    Hi Carol;

    I have had the same thing when I lay down or am doing sometime that requires a lot of concentration. It has been going on for years and I also have sleep apnoea.

    My breathing has changed a lot in so many ways yet despite all of them, my O2 and CO figures remain good.

    I can not slowly breath in and out either deeply of shallowly.

    I can't blow out to order and it's almost impossible to hold my breath. When I have to stop breathing to shower my face I let the out and don't breath.

    I quite often pant like a dog and it looks as if I'm out of breath but I know it's not so.

    They can tell a lot from an over night monitor and bloods taken for CO at the hospital.

    There are other signs that might indicate poor night time breathing such as a general tiredness, early morning headaches that go away within a hour or two after getting up and hallucinations.

    It would be nice to know if other have similar problems or other breathing related issues.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Hi Terry

    I am sorry I made you feel uncomfortable, that was not my intention. I wanted to get feedback from other MND sufferers

    Bst Wishes
    Carol

  4. #4
    Forum Member Terry's Avatar
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    Hi Carol,

    Do you have any similar symptoms other than when first laying down?

    Love Terry

  5. #5
    Forum Member Ellie's Avatar
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    Carol,

    When you want to start a new thread, this is what you should do:

    1. Click on FORUM

    2. Click on the appropriate sub-forum, LIFE WITH MND in this case.

    3. Click on FORUM TOOLS over on the right hand side of the page.

    4. Click on POST A NEW THREAD and then type away.

    5. Click on SUBMIT NEW THREAD and that's it done.


    It's not really appropriate to post a new topic in the middle on an unrelated thread and anyway, you'll get answers to your specific query in your own thread - much easier for you to read replies all in the one place, and you can follow through with questions on people's replies in that thread by typing in the QUICK REPLY then click POST QUICK REPLY.

    Hope this helps,
    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

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