And so we begin the eliminations...
Hi there, new here.
Been dealing with what I now believe, and the dr believes, is MCAS for about 20yrs. I've always had some mysterious autoimmune issue going on that could never be pinpointed but now I'm finally getting answers.
A little of my story.
My symptoms first started in 2007 after visiting my grandfather in NY and he had a heart attack and died outside of the restaurant we were at for lunch. I had to call 911, and not being from NY I had to describe landmarks to direct the ambulance, but it was too late. I was 22.
I started dealing with severe light headedness, dizziness, and low bp. Got diagnosed with Graves Disease, but it oddly cleared up on its own 18mos later. Got told I might have celiac disease, which was new at the time. Going gluten free for years helped a lot.
In 2011, I had my first baby. Afterwards, I was in a flare for months. Profuse face sweating, heart palpitations, itchy symmetrical rashes. I had the rash biopsies but they said I just had inflammation.
Years go by. I deal with these symptoms plus new ones like severe gastro issues. Then in 2017 a new one came - trouble swallowing my first bite of food every time I ate. No matter what I ate, the first bite would get so stuck, I'd have to vomit to dislodge it. This would happen for weeks at a time.
Next came random fainting. Felt funny one Dec day in 2018 and then woke up on the floor, vomiting and urinating myself. This happened again a few weeks later but thankfully my husband was present.
So at this point I have a severe heat intolerance (in AZ no less) because it gives me a painful prickly feeling. I can't even take hot showers. I having *profuse* facial sweating, itchy rashes on both sides of the body, palpitations, and periods of really high and really low bp.
I then get diagnosed with Hashimotos.
I have 2 more babies in 2023 and 2025. During the pregnancy in 2023, I fainted 3 times in a row while 7 mos pregnant. Again I urinated and vomited on myself.
In my final pregnancy in 2025 my blood pressure got so low I got under care of a cardiologist. Bottomed out at 55/32 right before my c section.
So now I've been tested for carcinoid syndrome, pheochromocytoma and paragangliomas, had a full cardio workup including a 2 week heart monitor, had my thyroid scanned and now....
I am here. Hpping to get answers soon. Thanks for reading my story ❤️🩹