Hi all!! My name is Kari, and I am a wife and mom of three kids under five. Yes, our house is loud
I have had health issues that came to the forefront after a strange illness almost 15 years ago. My mom has also had odd health issues and symptoms, so "normal" in my house was a bit of a moving target. A lot of symptoms I experienced were never mentioned to doctors until after I got married, and my husband was shocked at all the things I considered "normal" and he knew that they weren't and insisted on going to the doctor
Having a chronically ill parent definitely changes your perspective on things
I was diagnosed with severe IBS after a misdiagnosis of Celiac disease, migraines, and chronic fatigue. I'd never been able to work full time due to fatigue, and had to finish my university degree from home instead of heading into medical school...kind of ironic now! When I was pregnant with my second child 4 years ago, I started experiencing "episodes" of flushing, feeling extremely hot, sudden headache, cramping, diarrhea, tremulousness, severe mental fog and tachycardia...and once my heartrate started to climb, I'd black out if I didn't get horizontal immediately. It was very scary with a young toddler and a big pregnant belly, but my doctors were unconcerned and said it was "just pregnancy". But the episodes kept coming closer and closer together, and alas, did not disappear when my son was born...in fact, they got worse. I was diagnosed with OI and early in 2011 with POTS, and after I applied for disability, my cardiologist informed my adjudicator that the diagnostic criteria had changed and I no longer fit into the diagnosis. Sigh. Oddly they've never caught my true symptoms on a TTT, and I started trying to nail down why (since I experience symptoms all the time), and I realized the exam rooms were cold, scent free, and I was fasting. It was around that time that I came across and article suggesting probing into MCAS for POTS folks with flushing. Since my mom has always flushed, it never seemed strange that I did too....I didn't realize it was actually a symptom
I've tried all the POTS meds, and it made absolutely no difference in my symptoms (which is what I also found with the IBS meds that I tried before).
Two weeks ago I had allergy testing done with an immunologist (only allergic to cats and dust mites), and she also ordered baseline and flaring Tryptase, urine methylhistamine, VMA, etc. She is thankfully familiar with Mastocytosis, but I don't think has any idea what mast cell activation syndrome is, so I'm picturing a bit of an uphill battle here. I when off of my antihistamines for the testing, and ended up with even more severe flushing and burning arms, multiple migraines and sores in the back of my throat. For my follow-up tryptase test, I was able to induce a reaction with a piece of very rich chocolate cake....it worked like a charm, and I sure enjoyed it
I have already learned so much reading through the forum posts, and I'm very thankful for the transparency and spirit of compassion that I've seen! I do have a few questions for the wise ones here...
1. What kind of disability can masto/MCAS cause? Although I have never gone into anaphylactic shock, I think I may have been experiencing recurrent low-grade anaphylaxis. With each "episode" I have, I become extremely weak and fatigued, and physically just cannot stay awake. Since this happens numerous times every day, there are very few things I can actually do anymore, and only am able to get out of the house 1-2 times a week when my husband is able to babysit me
I also require full-time help with my kids, as I can't be alone with them since symptoms come on so quickly and suddenly. Can masto/MCAS cause symptoms like this?
2. I have done A LOT of research on this type of illness, and I've yet to come across some solid articles about how to diagnose MCAS if clinical testing comes back negative. Does anyone have any suggestions? I'd like to have some info to take back to the immunologist at the end of March, as it seems as though she was quite happy to never see me again if my results came back negative.
3. I've been carefully evaluating triggers, and although I can identify some (standing/physical stress, physical pressure, scents of any kind, chemicals, loud noises/lots of movement, different foods, heat, fatigue, etc), there are many that just can't be avoided and I often react even when I can't nail down a reason. Is it possible to react to so many different things? And what do you do when you can't possibly avoid all of them?
4. I've seen lots of reference to the low-histamine diet. I'm unsure how I can avoid leftovers when I'm not well enough to be up longer than to grab myself a bowl of cereal...I definitely can't cook, and while my hubby comes home at lunch to make lunch and he cooks supper, I am often sleeping when he eats with the kids. Any suggestions?
Sorry this has been so long - if you've been able to hang in, thank you!! I look forward to learning so much from you all!!