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Breathing complications with myasthenia gravis
Breathing problems are a common but often overlooked symptom of myasthenia gravis. Weakness in the diaphragm and chest muscles can make it harder to take deep breaths, cause shortness of breath during activity, or nighttime breathing difficulties. Sudden breathing difficulty could be a sign of a Myasthenia crisis.
How has MG affected your breathing, and what strategies or tools have you found most helpful for managing shortness of breath?
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6 Replies
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My breathing issues are severe. I use a noninvasive ventilator to support my diaphragm and breathe at night.
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I’ve used a bipap machine for five years. Pitcher’s me sleep since I have sleep apnea. Obviously it helps my breathing as well
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Has anyone found certain medications work better than others for shortness of breath? Care to share what they are?
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I had to move up from a Bi-Pap to a non-invasive Ventilator. I have one setting for during the day, and since I have Sleep Apnea, a stronger treatment for night. When the weather is hot and humid breathing becomes more difficult. I have Seronegative Myasthenia Gravis. My treatments are Immunosuppressants, IVIG Treatment every other week and Prednisone.
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I’m newly diagnosed Seronegative with severe sleep apnea. I’ve had symptoms for last 5 years, with the last year all the serious health issues came to light. Newly diagnosed trying to find the right treatments. I was recently in the hospital for an exasperation due to breathing difficulties and unable to swallow water. My symptoms had been getting worse and worse while downgrading from 60mg of prednisone by 10mg every month. Well, once I got to 20mg all the symptoms were back plus increased breathing issues…couldn’t lie flat, couldn’t catch breath, oxygen in the 80’s without supplemental 02, etc. I used my Bipap Asm one night for 4+ hrs (great night sleep for me…insomnia for months) and woke up congested with a deeper cough with exertion. By, the weekend I was struggling to breath and drink. I believe an increase in IVIG pulled me out, I think.
Could a high pressure on my Bipap cause my breathing muscles to get worn out/fatigue them? I can’t get a consistent comfortable pressure on my Bipap. I’ll have a good night, then i can’t get enough air to fall asleep, and then most of the time it’s too much lately. It all depends on how I have felt that day in my chest. Until I can see my sleep doctor, I’m using my old “normal” bipap with lower settings. I can fall asleep, just can’t stay asleep. I normally breath shallow cause it hurts to take a deep breath. Since, my hospitalization last week, I actually feel bruised under my breast in a muscle.
Has anyone else experienced something like this? This whole thing has scared the daylights out of me. I’m afraid to go to sleep have the time.
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I have seronegative refractory myasthenia gravis as it is very resistant and it does not respond much to immunosuppressants. I am on 40mg steroids per day with pyridostigmine and cell cept.
My breathing issue is driving me crazy, its been months now. Chest tightness and pressure is hell bad, I can’t even lay down because of it. At night i sleep for maximum 2,3 hours and when i wake up my chest pressure is too high that i have to walk and get up otherwise i would choke. What should i do? Can bipap help me?
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