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    • #17899
      Price Wooldridge
      Moderator

      LEMS can cause respiratory ventilation problems due to muscle weakness, especially to the diaphragm. I’ve had much experience dealing with patients in severe respiratory crisis as a Registered Respiratory Therapist (I’m not currently practicing).
      As a LEMS patient, if you ever find yourself in respiratory distress, get help. Call 911, or get to an acute care center quickly. You should know when you’re beginning to get in distress. Breathing may become more difficult. You may feel “air hungry”. You won’t want to lay down, but rather stay seated, upper body extended and slightly forward. You may brace yourself with you arms, in what is known as the “tripod position”. Notice any large chest excursions as you try to breathe. Again, when you notice or feel these symptoms, seek help immediately. I’ve noticed patients want to reach out to their neurologist because it’s the LEMS. LEMS may be causing your breathing problems, but acute respiratory distress needs immediate attention.
      Recognize the symptoms and get help. I hope this is helpful.

    • #17917
      Joyce Crawford
      Participant

      Thanks for this post Price. It’s really what I needed to hear to remind me to not ignore my severe shortness of breath when I accidentally overdo. I even had my cardiology fuss at me for not going to the ER. Of course, since I had worked in the ER, I really don’t go until I absolutely have to. Joyce

      • #17918
        Price Wooldridge
        Moderator

        Yes, @joyce275 no one “wants” to go to the ER, especially if you’ve worked in one (I have), or been in one a few times. I will say there have been a couple of times I felt such that I just knew I had to get in or I knew it was time to call 911. But sometimes there’s lot of waffling about it.
        I would comment, if you’re having frequent bouts of shortness of breath that are ongoing, significant, and worrisome, you need further evaluation. There is a lot of help and technology. I would report this to my PCP and try to get a pulmonary consult with a pulmonologist. They can get a pulmonary functions test ordered for you and evaluate. This should pinpoint your problems. I have COPD and get a pulmonary functions test once a year and see my pulmonologist twice a year.
        And nice to meet you yesterday too!

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