@windwalker, Tdrell and Lindam272 Linda, I like MANY of you was misdiagnosed with Asthma for YEARS prior to a correct diagnosis of MAC .. OOOOOH these doctors!! Hugs! Katherine

@katemn Thanks Katherine. This really is a great community. It would be great to really get to meet each other.
You are right about being your own advocate and gaining as much knowledge as possible. I was a migraine sufferer for many years (unfortunately my daughter inherited that) and I read everything I could get my hands on about migraine. That was back before the internet, so it was more difficult. One of the things I read said that people who have migraines often are more knowledgeable about them than most doctors, unless the doctor is a migraine specialist. I believe that and I am sure that is true of any medical condition. That is probably why it took so long to diagnose my cirrhosis. As I look back, knowing what I know now, I had too many signs to not be diagnosed, I was just not jaundiced.
JK

I was told also that I had asthma, cant help but think that the MAC is causing it in some way.

Heathery..The gold standard test to know if u have asthma is the Methocholine Challenge...not complicated tdrell

Terri, I too was told for years that I had asthma mainly because once it
starts on one medical record, the following doctors just assume that first
diagnosis was correct. I did not have asthma, and PFT show no improvement with
albuterol.
 

@windwalker this is so frustrating how these things get on our record and live there forever. I am trying to get corrections made on my portal record now because I do plan to change doctors so when a new doctor gets my information I would like it to be correct. It has been so frustrating trying to get my PCP to make these changes but I have accomplished getting a couple of them corrected.
JK

JK, that is a smart thing to do.
 

Do many doctors insit that I have asthma simply because they don't have any other word to define what mysterious ailment that I have. Asthma is an easy diagnoses to throw around. I was misdiagnosed with Asthma for the first 2 years that I was ill & I was treated with very high doses of steroids, which was the worse thing they could have done for me. I was even giving my own IV Push Solumedrol at home! It was crazy, crazy! Then Johns Hokkims did the methocholine challenge test 2 times and both were negative. And my PFT's have always been quite good & do NOT show any response to albuterol. But STILL, doctors turn to the east diagnoses word- "Asthma!!! It makes me so mad!!!

@jentaylor, Jen when I was very young .. in my 20's I read an article about a woman who never gave up .. went to 17 doctors before she FINALLY got a proper diagnosis .. she felt SHE knew her body better than any doctor and just wouldn't give up until she knew what was wrong. I never forgot that article raising my children .. one with issues. I would tell you the same. Only YOU know your body .. don't give up until YOU know it is functioning as best it can.

BUT we DO have to be realistic in this current day and age .. THIS medical environment of limited time with the doctors .. THEIR being PUSHED by the insurance companies .. THEIR being PUSHED from above by the almighty dollar to bring in the dollars to make the overhead. They are human too. They went to medical school USUALLY for higher reasons .. to help people .. most of them never dreaming they would be trying to practice medicine in this dollar motivated environment .. we need to have some compassion for them also. It can't be all fun and games for them to be practicing medicine in this day and age. Let's try to keep that in mind AS WE ADVOCATE for OURSELVES! We are here for you! Hugs! Katherine

I hear you @jentaylor. They have done the same to me, they just dont get it!