COPD Misdiagnosis

[threehappypenguins]

My husband is 32 years old (as of now) and first got pneumonia with very painful pleurisy (no coughing) in January of 2010, and then got it again in March of this year (2011). It was the same thing (painful pleurisy, no coughing). He also got bronchitis in February of 2010 (not long after the pneumonia) and was prescribed to use a Salbutamol inhaler until the bronchitis cleared up (which it did).

The doctor ordered a pulmonary function test after his second bout of pneumonia this year and when my husband saw his doctor again, his doctor told him that he had COPD (and never offered any treatment). He only smoked for about 7 years (age 20-27) and since then quit smoking. He tested negative for Alpha 1-Antitrypsin deficiency. He was diagnosed with asthma when he was a child, but has not used inhalers since perhaps early teens (except for the short term salbutamol recently as noted above).

My husband saw his sleep disorders doctor (he has chronic-obstructive sleep apnea and is on CPAP therapy) who also happens to be a respirologist. My husband told her about the COPD, and she looked at his medical history and was adamant that he did not have it. She said that sometimes COPD and asthma can be confused, and it might be that he simply did not respond to the steroid (or whatever it was) that they had him inhale during the pulmonary function test. She said that there is a test that will tell for sure whether he has COPD or asthma, but my husband never wrote it down and can't remember what it's called. She said that she would order the test, but nothing has happened for months. My husband has since seen his family doctor and requested this "test," but his doctor has no idea what he was talking about. His sleep doctor (that is the respirologist) has since gone on medical leave and we can't find out this test name.

We desperately need to get this test done because my husband was just denied life insurance because of the COPD and now he is without life insurance!!!

[threehappypenguins]

I also forgot to mention that his grandfather smoked like a chimney since he was 8 years old and didn't quit until his 60's.

[threehappypenguins]

Thank you for your answer!

We live in Canada (Halifax, Nova Scotia). Do you have any suggestions for Medical Centres or specialists in this area or in Canada? We would not receive coverage for seeing a specialist in the United the States.

As for his family members, the only known family member of his that has respiratory problems is his grandfather (mother's father). He has emphysema and is 82. It was probably about in his 60's that he began having respiratory problems. My husband is also the only one in his family that has asthma. Even our two year old son is perfectly healthy with no respiratory problems.

There was one other thing I forgot to mention (my mother-in-law reminded me). My husband did asbestos removal for about 3 months when he was about 21 years old or so. The problem is that it was a really shoddy company that didn't do proper training nor warning and education about asbestos. They didn't do proper decontamination and would sometimes take their masks off in the sealed off areas. I'm not sure if the asbestos would have something to do with this?

We are seeking answers, but unfortunately the waits to see some doctors can range from months to years (it took my husband over 2 years to see his sleep doctor... and he was on a cancellation list). In order to get things done quickly, it seems as though we have to do our own research, and tell our family doctor which tests to order. Unfortunately that is the nature of universal healthcare in Canada.

[threehappypenguins]

So my question was... what is this test called so we can tell my husband's doctor to order it and get this cleared up?

[David Tinkelman, M.D.]

There is no single test that can distinguish between Asthma and COPD, but a number of tests that are strongly suggestive of but not specific.  For example: 1) pulmonary function testing that shows marked improvement following the administration of an inhaled bronchodilator drug. 2) pulmonary function test change in response to a specific inhalant (methacholine challenge) suggestive but not specific for asthma. 3) CT scanning comes the closest to being that single test when it shows evidence of emphysema.  And there are others.

Given the importance, to you and your husband (health and insurance), of establishing the correct diagnosis the best advice I can give you is to request consultation with a recognized expert in the diagnosis of asthma and COPD, preferably with a specialist at a Medical Center with a national reputation; one who has conducted research and treated individuals with both diseases.  Such specialist are to be found at many institutions including:  The University of Pittsburgh, National Jewish Health in Denver, The Mayo and Cleveland Clinics, the University of California Hospitals in San Francisco among the best.

Any complete diagnostic evaluation should also investigate the reasons for your husband’s pneumonia, pleurisy and bronchitis.  In this regard, it would be wise to repeat the alpha-1 level and your husband’s associated phenotype (you can ask the consultant about this).  I would also mention that COPD occurs in clusters in some families and it would be of interest to look to other family members with the early onset (age 32) of serious respiratory disease.

Finally, your husband should be checked for Cystic Fibrosis as this is a chronic respiratory disease that need not occur in childhood, but may manifest in early adulthood and, for that reason remain undiagnosed.

Whatever you do, do not accept pat answers.  You must seek answers whatever it takes.

Good luck