Share Your Diagnosis Story

The story of my diagnosis is still ongoing. For the past few years constant visits with doctors always lead to repetitive lab work and tests showing no results. On multiple occasions I was referred to cardiologists to do deeper testing which always resulted in "You are perfectly healthy, it's all in your head" or "it's probably anxiety". It wasn't until recently when seeing a neurologist that dysautonomia was mentioned. Apparently the doctors were right when saying it was all in my head, but not the way they meant it. I am now working towards the diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) a rare neurological disease and hoping the first part of my journey finds its end soon.

My HAE diagnosis took a long time. To complicate things, some of the diagnoses I had along they way weren't misdiagnoses, but too many of my symptoms were blamed on them. Ie. Yes I have allergies, but the swelling I get isn't from them, even if my allergic reactions can be a trigger. Other things like this - post nasal drip, food intolerances, migraines (not sure if that's correct or not), UTIs, injuries.

I had GERD as a misdiagnosis - that one annoyed me as I never thought I had it, my opinions and knowledge about myself were dismissed at the time (ie. the doctor thought he knew what side I slept on better than I did) and I went through testing that was negative for it. Then I ended up with acid reflux due to withdrawals from the medication I didn't need in the first place.

I don't know how many times I've had tests for arthritis, including a bone scan.

I was really quite sick by the time I got diagnosed in my 30s with hereditary angioedema, and I think I had symptoms of it as a baby, and there is a definite attack I had at a very young age after swelling extremely from a mosquito bite and I was taken to the hospital where I think they just gave me benedryl.

My throat attacks were pretty much constant by the time I was diagnosed and there were days where making noise, let alone speaking was quite painful. I had seen multiple specialists, done multiple tests and even then the c1 inhibitor test that I had done was actually due to a fluke of an allergic reaction that my allergist didn't think would have been due to allergies. So for once my body misbehaving at the time (was an actual allergy) helped me out with a rare diagnosis, where my doctor assumed the opposite of most - he blamed something rare on something common and was wrong about the specific reaction, but right about what I had. He wasn't able to diagnose me though, I had to wait months to get into my hematologist, and repeat tests multiple times before seeing him to finally get that diagnosed.