An Ongoing Problem
This sort of thing went on for years! At one point or another I was told I had lupus, sarcoidosis, scleroderma, Sjogren’s syndrome, lymphoma, mixed connective tissue disease, etc. Granted, I know that a diagnosis is difficult to come by, but when each doctor “diagnoses” you with something different and discounts the diagnosis given by the others, well, it gets frustrating!
Furthermore, more than once I had one doctor prescribe a particular medication only to have another doctor discontinue it and prescribe something else. I’m sure you can guess what happened when I went back to the doctor who prescribed the previous medication!
Honestly, I could fill pages with these types of experiences, but I’m sure you get the idea and have probably experienced similar situations at some point during the daunting process of discovery, diagnosis and treatment. I quickly learned that the only way to deal with the situation was to streamline my care and have a team of doctors who could work together.
Granted, it's pretty much guaranteed that frustrations will still exist, but hopefully they will be less frequent and less severe once all of your medical professionals are on the same page!
Creating a Team
So how does one go about creating a team of doctors? Well, for me, it all started with one doctor.
Remember that the doctor(s) you see essentially work for you! If they make you feel rushed, unimportant, or seem disinterested in what’s going on, stop seeing them and find another doctor! That is what I did.
I found a new rheumatologist. She was inspired and passionate about her work and truly wanted to find the underlying cause of what was going on. I knew she was the doctor for me from the very first appointment. She wasn’t just interested in treating my symptoms — she wanted to make me well. Wow! What a concept!
Although I went in equipped with a prepared list of all the symptoms, complications, preliminary diagnoses, medications, etc. that I had experienced over the years, I chose not to babble it all off at once. I have found that some doctors will piggy-back off the findings of other doctors and I wasn’t interested in the same old thing.
I waited for her to ask questions and provided the answers as efficiently as I could. This allowed her the room to truly take in my answers, consider them, and ask the follow-up questions. I wanted her to start from scratch — and she wanted that as well.
She conducted a battery of tests — far more complete than any I had experienced before. Based on the findings, she personally selected and referred me to doctors with specialties in the areas that pertained to my condition, such as a nephrologist, a neurologist, a hematologist, a pulmonologist, etc.
Although a specialist herself, she essentially became my primary care physician and oversaw and coordinated ALL of my care with each additional specialist reporting back to her. This made all the difference in the world.
