Two weeks before Easter, I finally got in with a doctor who may be a real blessing to me under the circumstances. He exceeded my expectations. I was just hoping for someone who would be willing to re-evaluate me/re-test me.
He said he didn't feel a retest of the methacholine challenge was necessary or even a recommended course of action. Here's where he's such a gift to me: He explained that he used to do research, and that while the methacholine tests were considered very useful in research, he's not committed to the results that they give in clinical/doctor office settings. He said that one of the things that can happen in a clinical setting is that the methacholine medication/chemical may not be prepared exactly as necessary. He doesn't see the test as a useful tool for giving a diagnosis.
I was floored. I had been nervous about a re-test but it seemed that my PCP, an allergist and the ENT were all going to wait for this re-test. Yet, I was reading that if there isn't an allergic exacerbation, the test could give a false negative result and something about how certain (deep?) breathing that's done as part of the test can actually reduce airway constriction... I had printed out the guidelines from the American Thoracic Society and other legitimate sources - prepared to argue that the test is NOT necessarily flawless.
... I never had to take those papers out. Thank goodness! I didn't want to be "that patient" who is "difficult" -- whatever. Advocating for myself like that takes an extensive amount of energy and my ability to express myself verbally is impacted by this effort and fatigue!
So, I didn't have to make any arguments -- the doctor made them for me. We're on the same page!
He's going to treat symptoms. He did listen to my medical history. What I say *IS* important to him. He said to call him if I have difficulty. He has a plan that will make sure I get enough medication but that I'm not over-medicated (since my symptoms are seemingly connected to allergic exacerbations). My chart says ?Asthma. He sent me for a chest x-ray since it had been awhile. He asked me if I had a CT scan before (no) but will only do it after he evaluates the x-ray. Everything is step-by-step and very well-reasoned.
My depression has lifted. I am getting things done around the house again. I was so preoccupied before, wondering if eventually, I wouldn't have medication to manage symptoms at all, and if any doctor was going to "believe me" when I said I couldn't breathe and needed help. That call that I made to the on-call doctor at the other office still kind of haunts me - she said none of the medications (that I used to use for asthma) would help me. That office never called me back or answered my online message that I sent -- I had always thought that if I needed help for breathing, that I could count on a response. It was downright traumatic to have been left in the state that I was in.
Doctors can cause depression. They can cause harm. Fighting doctors is exhausting and demoralizing. Since I've had complex health issues, I've realized the importance of the doctor-patient relationship.