Breathing problems
I'm a 47 year old male and I was diagnosed with the dok7 variant of congenital myasthenia about a year ago. I've been symptomatic for a few years, but all the tests for MG have been negative. Genetic testing finally found the dok7 mutation.
I'm curious how others have experienced breathing issues. Mine started a couple years ago as a minor shortness of breath while at rest. It's gotten progressively worse. Now I'm pretty much always short of breath and I always feel a pressure on my chest. At times the pressure is worse than others, usually in the evenings. Sometimes it's almost unbearable. I have a history of heart problems, but after a recent heart cath, my cardiologist doesn't think my heart is the problem. My neurologist refered me to a pulmonologist and after an overnight oximetry test they were able to get me approved for a non invasive ventilator, which helps a lot. Also, my pulmonologist says my pulmonary function test came back nearly normal. Has anyone experienced similar symptoms with MG?
I have been on a CPAP machine well prior to having been diagnosed with MG. For me the CPAP is great, I sleep all night without being woken by my wife kicking me, plus i don't have those 12-15 episodes per hour where i stop breathing, wake up slightly and then fall back asleep, then wake up and rinse repeat. Plus the cpap has a water compartment and warms and air and humidifies it, way way way less sore throats. With my MG, at once point i had an MG crisis, bad crisis at home sent me into an MG crisis. The Dr's warn you of this, but until it happens, it isn't something you can fully prepare for. I stopped breathing entirely, and was able to put my cpap mask on and turn it on, to push air into my lungs before i passed out. Having that cpap machine may have saved my life. My Dr says that often if you pass out, your breathing will restart on its own, but it was pretty scary. Otherwise with MG, i regularly get shortness of breath. If i am idle or not doing anything strenuous, i'm fine, any and i mean any strenuous effort, like 2 sets of stairs and i'm winded and struggling to breath. I rest for 5-10 minutes and i'm fine, i can do another 2 flights, then rest. But I try not to push it, pushing it can lead to a crisis. I also have a ventilator in my car, which runs off the car AC, just in case. Insurance would not pay for it, but if i need it, i'm ok with spending the $1k on it and have it if needed.
Hi
, I am sorry to hear about your breathing complications. I know others in our community have mentioned having some issues with breathing. Hopefully others will weigh in with their experiences soon. In the meantime, I included a link to an article about difficulty with breathing written by one of our patient advocates - https://myasthenia-gravis.com/living/difficulty-breathing. Wishing you well. -Jessica, MG Team Member
