The Challenge of Changing Doctors With Chronic Illness

I started my diagnostic journey in early 2008, nearly nine years ago. During that time, I have seen more doctors than I can remember, sometimes because I was referred to different specialties in my quest for answers, and sometimes because I moved to a different part of the country. Each time I see a new doctor, my diagnoses are refined, added to or sometimes changed.

My most recent doctor change was because my previous doctor was let go from the health center in my area. The man was an amazing clinician, but he did not like using the electronic health record system that was mandated, so I suspect that contributed to his sudden departure.

So what happens when you change doctors when you have a chronic illness? In some cases, you start over. The doctor may or may not look at your medical history, but he or she will likely want to order their own lab tests, x-rays or image studies. They may “take away” your diagnosis and put you back into the “what the heck is wrong with me?” category. After my initial diagnosis of fibromyalgia and “something else” in May 2008, I have alternately been diagnosed with chronic urticaria, cervical myelopathy, possible rheumatoid arthritis (RA), possible lupus, possible post-Lyme syndrome and I’ve had two doctors tell me that multiple sclerosis was not off the table.

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