Asthma, but not really
Posted , 2 users are following.
I was diagnosed with Asthma about 25 years ago. I was short of breath one summer when it was fairly humid and the air quality was not great. I went to my GP and they gave me a suck & blow (PFT) test. My breathing efficiency at the time was about 50%. They put me on Advair and a puffer. The puffers have never really made a difference, as I've never had an 'attack'. I eventually started feeling better and stopped taking the Advair, as it did not make a noticeable difference.
About 4 years ago, it bothered my breathing when I ate, my abdomen became bloated and I found it hard to breath. My doctor sent me to a respirologist who spent 2 years doing PFTs, but did not provide any answers. I finally asked him to do a chest x ray , which showed that I had atelectasis and an elevated hemi-diaphragm. The doctor blamed this on my Ankylosing Spondylitis, but the Rheumatologist said this was BS, as my chest expansion was fine and AS would affect the upper chest.
I asked my doctor to refer me to a second rheumatologist. He did a few additional tests, including a blood gas test and an asthma challenge. I failed the Asthma challenge, but only after they gave me significant amounts of methacholine. They also did a blood gas test and found my PAO2 was 66%. Based on some algorithm, he determined that I had a hole in mt heart. I'm thinking you're FoS, but OK off we go for a bunch of heart tests that discovered that my elevated diaphragm bothers my heart when lying down. They also did an ultrasound of my diaphragm, which showed that it is not paralyzed. Respirologist #2 decided that my breathing issues are related to my very mild sleep apnea. Repirologist #1, who is also a sleep doctor, said this is complete horses***.
I had a PFT at Repirologist #1 recently and I could tell the results were worse. The doctor did not tell me the numbers when I saw him for the folow-up, so I said the test seemed to be worse. He said yes the test was not as good the previous one, but it is in range with results over the past two years. Blah, Blah. He still did not give me the numbers. I mentioned that Ventolin does not seem to make a difference during my PFT, he agreed.
My doctor said to me at one time, it looks like they are just going to monitor your results as they get worse. At on point I said to my doctor that I came to you with problems X, Y and Z, and three years later I still have problems X, Y and Z. My doctor changed clinics shortly after that and dropped me. Other patients followed her, as the clinic mentioned it. I was not given the option.
Sorry for the rant, but my question is that this does not seem to be Asthma. In fact I recently had to go to the walk-in for Bronchitis and they said you have COPD. Since our medical records are all centralized and available online, it makes me wonder what's in my file.
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0 likes, 2 replies
jacqline Plain_Bill
Posted
I am sorry for your frustration and discomforts. When you at least know what you have, it makes a big difference in how you manage your life.
In general, I agree with you that it is doubtful you have asthma if you have never gotten relief from a rescue inhaler, as in albuterol. Noticeable improvement after using an inhaler is a gold standard for helping diagnose asthma. And you said you have never had an asthma attack, which generally involves wheezing and excessive coughing, as well as shortness of breath. That doesn't sound like asthma or COPD, to me, either.
You mentioned having a "suck and blow" test which was at "50 percent." This could have been a very low tech test that uses a small, plastic mechanism called a peak flow meter. You take a big breath and then blow into this little device. The idea is your doctor has you use it, or you have your own at home, and you blow into it when you' re feeling fine.... no shortness of breath (SOB). The number you reach is your "peak flow." For instance, the average healthy man (and many women) can easily blow about a 700 on the peak flow. If you blew 50 percent, that meant you might have tested at about 350 to 400. Not great but not considered the danger zone. As a personal example, I just got out the hospital for after 3 days due to an asthma attack. I only blew a 150. Made the same score twice, and it made me cough like crazy. That number was pretty miserable. But they all knew I had asthma (I also have very LOUD wheezing) so they were just trying to see if I was getting better.
And what is an "asthma challenge?" Did you actually have a full- blown lung function test?
I suggest you see a bona fide pulmonologist and get the lung function test. If it is not asthma or bronchitis or emphysema, etc., something else is going on with your breathing and it could be any number of conditions. You might need a cardiologist. No reputable doctor should be waiting for you to break down completely in order to get you a correct diagnosis!
I wish the best of luck to you. Write again with any update. ☺
Plain_Bill
Posted
Yes, the tests I've had were all full PFTs with the little glass booth. I do have one of those cheap plastic devices you blow into. I usually blow between 300 to 350, although I have not tried it in a while. I do usually wheeze when using this or doing the full PFT. My lungs also crackle at times, which I can sometimes hear myself. The panting test usually makes me want to cough my lungs out, but not always.
I have two hospital affiliated Respirologists with different specialties. The 2nd guy did more variations of the PFT on different machines. He said my lung volume is slowly decreasing, although not significantly. I've also had the full cardiologist workup with the full two stage stress test. I also did the breathing stress test on a bicycle, as my Ankylosing Spondylitis makes the treadmill a no go. They said I did well on the bicycle test.
The Asthma challenge is where they give you a drug that brings on an 'Asthma attack', either methacholine or histamine. They had to give me several doses of methacholine before I started to notice a difference in my breathing, although it did decline more rapidly once the effect started.
LOL. I had the urologists and the Neprhrologists arguing about whose problem my kidney issues are, the urologists said it was a kidney issue and the Nephrologists said it's mechanical, so it's a Uroloogy issue. Meanwhile they have no clue what's actually causing the issue. One Nephrologist said the next step would be a kidney biopsy, but I was not sick enough. Haha. The humour was lost on my doctor.
Thanks for the reply.