RE: Dismissing doctors
Different issues but similar experience. I'm sorry if this is long or hard to understand.

I was very ill as a child. Lot's of time at Seattle Children's Hospital. When I was in my 30's I wrote and got my medical records (from Children's - more on that later). As an adult I had unusual medical issues that multiple Drs could not diagnose. Many time I ended up with the wrong treatment. Example: I got a massive infection in my leg. I was swollen up from my ankle to my groin. I don't turn red when I get an infection so it got diagnosed as a torn meniscus. I said it's up into my groin, it's hard to urinate. The Dr said sometimes the swelling goes up instead of down. I went home and did a poultice with a heating pad for a couple days. The swelling began going away. Dr drained the fluid off my knee. Dark brown with a very high white blood cell count. The antigens had been killed with the heat - but he didn't say that. They did surgery anyway. That left me with knee problems where there hadn't been any. I have lots of these medical stories. Over and over again, pages of treatments that were not supported by my symptoms. If I pointed out discrepancies I was usually told "it's both". I'm now old enough to have grandchildren and have, until the last 8 months, no diagnosis.

About 3 years ago I started becoming exhausted and was less and less able to function. That leads to a year ago when I found those old medical records in the bottom of a box. I had never read them before. I began reading them and making appointments with every type of doctor I had been to as a kid - and, I sent a copy of the records to each. Eventually I got an appointment with an Endocrinologist (I researched him and thought he was pretty good). He put me through an extensive round of tests. We - it's a team effort - got a hit - hypogammaglobulinemia. Some of my doctors dismissed it - I dismissed them. The first medical person to tell me what that long word meant was a nurse (Lisa) that was in a different field, saw my chart and wrote out a long and very accurate directive for me. She was spot on. The Endo and Lisa helped me discover it was an immunology issue. (Later on, when I had begun treatment, Endo told me that he wasn't sure what was wrong but he read my records put me through every test he could think of.)

Getting ahead in my post, but a significant problem with immunology drs is that they are actually allergy/immunology and they treat far more allergy patients than immunology patients (my immunology Dr only takes immunology patients) - they can get the 2 disciplines mixed up in diagnosis. I thought back to Children's Hospital and called their immunology department for a referral. To my surprise they told me they accept adult immunology patients. I had to go through a number of additional tests (including a referral from my PCP) and was accepted as a patient. My first appointment was July 26, 2021. A lot more tests. I got a phone call on August 12, 2021 asking if I could come in on August 23rd when I learned I had a diagnosis and a treatment. I was diagnosed with CVID - Common Variable Immune Deficiency (a subset of hypogammaglobulinemia). I began treatment in September 2021 and am just beginning my 8th month. I infuse antibodies each week. I'm beginning to feel better. It is a lifelong treatment, but it was a lifelong journey to get to this point.