Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Hi ka here, so you have cmt and asthma also, right? If that is correct when did you get the asthma? I just all of the sudden started having breathing trouble last Aug. had never had trouble before. That is why I feel my phrenic nerve may be involved with my cmt. My asthma meds do not really help, I still become very winded just doing normal activities like walking up or down a few stairs. Some days just talking winds me. I would be very interested to know if you think your cmt and asthma go hand in hand and what meds you take for asthma and if they help. I take advair discus and albuterol. ka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 ka, Yes, I do have Asthma, but it is very mild. I had my first attack at 12-13 years (dust from moving), and was diagnosed with CMT at 16. I don't notice it most of the time, unless I have an extreme emotional state, like crying or laughing a lot. What I do in those situations is raise both arms all the way up, and sit upright (orthopnea). I also use back-pressure, by making a fist and breathing through it, it increases the pressure in your lungs and helps reduce the " out of breath " feeling. When that doesn't help, it's time for my Ventolin inhaler. I sometimes go for months without it; I believe that less is more- especially with any meds. When I get sick, like the flu, or a cold- it moves into my lungs (weakest part) and camps out there, and invites all it's friends! In the past, the only thing that helps then is anti-biotics, corticosteriods and codine cough syrup at night to get some sleep. I hate to take all that stuff, so it's really only for when I'm out of options. Anyway, knock on wood, I have never been hospitalized because of it. As for CMT, it only seems to affect my feet. I haven't put the two together (CMT & Asthma), so I'd need to do more research, and keep an eye on it. Hope that helps. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Hi , I guess I have asthma a little worse than you then. I take an inhaled steroid every morning and evening and take albuterol 2 puffs every 4 hrs. Like I said I never had any breathing trouble before last Aug. I have never tried the breathing through the fist but will give that a try. Thanks for the info. ka Quote Link to comment Share on other sites More sharing options...
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