I'm a male in my late twenties and ever since my early teen years I have suffered with several different symptoms although I wasn't sure if they were related. It started when I was 15 when I was a freshman in high school, I woke up in the morning and ate cereal for breakfast (as I always did) and before lunch I had this weird feeling in my stomach area and by late afternoon it felt so bad that I got the sweats and eventually threw up and did that for nearly a day straight. This happened about 3 times a year.
Around a year or so after that my hand began to swell and got so big I couldn't move my fingers. I didn't think this was related. This has also happened around 2 or 3 times a year since the first time.
I had dental work done when I was 16 and my upper lipped swelled up so big that it started to bleed. The dentist said this was normal and to worry. This was the only time my lip swelled until I was 23/24.
So I had those things going on an around 16 or 17 I ended up in the emergency room with severe stomach pain, they gave me so stomach muscle relaxants and that didn't help but said I should see a GI.
At that time I had an endoscopy and they also did a test where I ate a radioactive egg and they watched it digest thinking I had a blockage (based on the symptoms of the throwing up and the pain which were actually at different areas). After no diagnosis I moved on and apart from the hand swelling (which also soon became foot swelling) and the throwing up I just lived with it.
I had another set of severe stomach pain and bloating at 23, I saw my general practitioner and they thought I had a bladder infection and put me on antibiotics. Antibiotics have always bothered my stomach especially when I'm not eating with them which because of the stomach pain I obviously wasn't eating. Either way this made the pain last longer. I ended up in the hospital and they did a CTscan. Saw "something" thought I might have diverticulitis or crohns. A week later a new GI Dr did an endoscopy and said I had some colitis.
He was the first Dr to think the swelling and the stomach pain were related and considered several auto-immune options. So much so that I I decided I was wasting my time and stop going to the Drs.
6 months after seeing the rheumatologist I had swelling in the lower buttocks that spread to the scrotum. This obviously freaked me out.
I did some of my own research and found only one disease that would cause scrotal swelling, foot and hand and lip swelling. Hereditary Angioedema.
Because I was discouraged I didn't pursue it anyway and eventually the scrotal swelling happened again and I went to the my GP and told him the GI wasn't helpful and presented my symptoms more clearly with what I had read in mind. He sent me to an immunologist (why I never saw one with all the swelling I had is beyond me). The immunologist is a young dr and obviously still remembers what they learned. She tested me for HAE and I was positive.
After spending over $100 a month for a colitis medication, and then $50 a month for an IBS medication along with several exploratory tests I was the one who figured out what I have.
Fortunately there are treatments but they're new and still very expensive but at least I have a diagnosis.
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