Hi!
I'm Drea. I'm from Eastern Washington, the Never-green side of the state.
In 2007 after the birth of my daughter I started having terrible abdominal pain, headaches and facial numbness. I went through gyn exams, colonoscopy, and neurology. I was told it was a benign ovarian cyst, mixed migraine syndrome and Chiari Malformation. Then I was told it was definitely not Chiari Malformation it was pseudo tumor cerbri. And then when tests for that were negative I was told I was just fat and depressed. (Yes those were the doctor's exact words
)
Then I got pregnant with my son in 2009 and I dealt with horrible hyperemesis gravidarum, including a PICC line for 24 weeks. During that time my abdominal pain and headaches cleared up. I don't know if my body was just busy trying to deal with the baby onslaught or if the masto went into remission (which is something that could theoretically happen). But either way I actually felt pretty good during my pregnancy except for the uncontrollable vomitting and the kidney stones that developed from the long term IV fluids and zofran.
And then when my son was about a year old I started having the same abdominal pain and headaches again. And I saw the same GI doctor as in 2007. He thought Crohn's disease. But during the colonoscopy saw only healthy colon but took some biopsies anyway.
And those biopsies came back with increased mast cells.
And that was the beginning of finding answers.
The initial diagnosis was mastocystic enterocolitis. They wanted me to do a 6 week steroid taper, which I couldn't do because I was still nursing my son. So my GI doctor said "well we can do this drug called gastrocrom and h1 and h2 blockers, theoretically those should be safe for nursing". It took 2 weeks for my pharmacy to get the gastrocrom. And the drug regiment changed everything!
I wasn't 100% better, but it helped not only my abdominal pain and diarreah but my horrible back pain that I had attributed to my botched epidural was better. My headaches were better. And that's when I started researching systemic mastocytosis.
I saw Dr. Mauro at OHSU in May 2011 and he reviewed my chart and my CT scans and said "Oh, yes, clearly you have systemic mastocytosis. We have biopsy proof that it's in your intestinal tract, we can see evidence of it in your skin and your eyes. And on your CT scan there's some evidence that you may have mast cell involvement in your spine and in your spleen." He wrote a letter to my insurance defending my use of gastrocrom.
It's been so good having an ANSWER! It doesn't take any of the pain or crappy symptoms away. But at least now I know WHY these things are happening!