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    • #19835
      Lisa Ryan
      Participant

      I am trying to understand the results of a recent pulmonary test I had.  I have the numbers but no explanation.  My MIP was 48% of predicted 120 and the MEP was 71% of predicted 146.  My GP is the one who gave me these numbers over the phone because when my Internist phoned, the numbers were not in.  I tried to get another appointment with her but no one has phoned me back.  I get shortness of breath at times and have a feeling of a closed airway at times during the night.  Have woken up once gasping for air but only a few instances like that.

    • #19839
      Anonymous
      Inactive

      Hi Lisa,

      I do that gasping for air thing too, also infrequently (2x so far in 1 year). My FVC is good at this point so they did not continue with the more advanced tests. I find myself winded if I talk and walk at the same time now, so I think that my diaphragm is getting weaker, just not enough to act on yet (?). They got me on a CPAP though, because they said I have severe obstructive and mild central sleep apnea.

      • #19854
        Lisa Ryan
        Participant

        Hi John…funny for me as well my FVC was ok, not great but they still continued on with further testing.  It was the test where you breath in and out while reclining and then while flat that they found the weakness but there is no doctor following up on this.  It’s very strange to wake up instantly with a gasp for air isn’t it…its quite disturbing to me.  Another time I woke up feeling like I was being smothered, I don’t know what position I was lying in that time.  I don’t have any answers for any of this so I am still asking questions and trying to get a diagnosis.

    • #19850
      Anonymous
      Inactive

      Hi Lisa, yes I had a PFT that included MIP/MEP. My MIP was fine, but my MEP was very low at 30% predicted. I’m already having chronic respiratory failure and am on continuous oxygen, and I don’t know how this part of the puzzle piece fits in the overall picture, but just wanted to respond to your question with my experience.

      My full evaluation is next week (I have “probable ALS.”)

      Hope that helps!

      • #19855
        Lisa Ryan
        Participant

        Hi Anne, thanks for your response.  In your case, what did they say is the cause of your low MEP?  So much so that you are on oxygen?  Is this all stemming from probable ALS or they just didn’t know and put you on oxygen?  Have you had any of the sleep studies done that John has had?  What type of evaluation are you having EMG/NCS Clinical?  I am interested to know because I am not getting any help from doctors anymore, they seem content to just let me sit here with progressing issues and don’t care to dig any deeper unfortunately.  It is so very stressful and frustrating and scary to be in this position isn’t it…

    • #19867
      Dagmar Munn
      Keymaster

      Lisa, I’ve had to do Pulmonary Function tests every time I go to the ALS Clinic… and have managed to keep my score for forced expiration in the 90-93% range.

      Here are some breathing exercises I do daily: “How Blowing Bubbles Helps Me Breathe”

      I also found that sleeping on my stomach/side eliminated snoring and breath-gagging. When I lay on my back, my tongue eventually slides back into my throat blocking my airway. Rolling to my stomach/side eliminates it. Plus, it’s better for my spine vs. sleeping on the back and being propped up by a lot of pillows.

      Sitting posture during the day is also important. I try to avoid slouching and slumping, which restrict correct breathing and weakens your breathing muscles. I wrote about sitting posture here: “A Healthy Sit”

      • #19871
        Lisa Ryan
        Participant

        Thanks Dagmar, I will try all these tips as anything is worth a try to improve things.  I do sleep on my side but somehow during the night I always find myself on my back, even if I have a pillow wedged in my back and between knees…

    • #19887
      Tom Hehir
      Participant

      Hi Lisa,

      My FVC was at 50. I had much difficulty sleeping. I got a bipap and eventually my FVC went to 90+. I still use it every night as I think it gives my diaphragm a rest and sometimes for an hour or so during the day when I nap. As I now get good sleep, my other symptoms are stabilized.

      Tom

      • #19895
        Lisa Ryan
        Participant

        Hi Tom, thanks for the info.  Currently I am waiting to see the Internist that ordered the tests.  I will see her on Monday and ask her what other tests would  be helpful….maybe she will refer me for a sleep study….I think they would be able to tell if I need any assistance with breathing.  I wake up 4 or 5 times or more every night, I am never rested and always tired with a headache in the morning.  I am so very frustrated because my neuro is just taking a wait and see so I have no diagnosis so I have gone on to have my breathing checked and lungs checked via my GP.  I hope to find answers and help soon…

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