Since I was 15 years old, I have had recurrent bouts of angioedema (I am now 31). All allergy tests have only shown a slight allergy to dust mites. The angioedema can be as frequent as every other day and ranges from a swollen fingertip to a swollen face, throat and/or tongue. Swelling does respond to benadryl if taken in timely manner but often, the swelling simply has to run its course. I have sometimes had to take prednisone for bad attacks. From age 18 on, I have had recurrent stomachaches (maybe as often as once a month) that are extremely painful - almost sending me to the ER on several occasions. The stomachaches are accompanied by diarrhea and followed by days of constipation and abdominal distension. For years, I took tylenol or advil for the stomachaches to no avail. I just thought it was something I ate. However, I noticed that the stomachaches were in conjunction with bouts of swelling and just in the past couple years found that benadryl and zantac helped treat the problem. While in college (Holy Cross - Dr. Timothy Johnson was our speaker at graduation!), I went on birth control pills for acne and found that I was allergic to every single one (had swelling and terrible hives). I was in the ER every other week with a swollen throat. I saw an endocrinologist at this time and was found to have all normal levels of hormones (only checked once) - this was also because I had noticed that swelling definitely increased after mid cycle and got better after period began. At this point I basically resigned myself to the fact that I was going to swell and that I had to deal with it. My doctor even told me "you may never know why you swell" and I thought - if that is what he says, then they will never find a cause.
My swelling has continued throughout my twenties but around 25/26 I started noticing fatigue, joint pain, muscle aches and tingling numbness on right side of head. The only thing that was found was slight anemia. Over the past few years, I have felt older than I actually am - very tired all the time, my hands ache (some days worse than others), my knees ache (especially post baby - I now have an 8 month old child) and I have also noticed difficulties with memory and concentration. Day to day I forget a lot - more than i think is normal. My swelling did improve during the pregnancy (except for first 3 months for which I was very sick and had a lot of swelling) but returned with a vengeance within days of giving birth (especially while I was nursing). After having the baby I also started getting these hives which actually turned out to be a reaction to bed bug bites (!!!!!). We have no idea where the bed bugs came from but our best bet was the hospital where I had the baby. We did have an exterminator for this and the hives got better but these hives were enormous.
The bottom line - I believe that my immune system is clearly misbehaving. Although I have always put my best foot forward with the swelling (I'm a high school teacher and I go to work with my eye swollen shut/face swollen, etc sometimes!) - I am not ok with the fatigue, aches and pains and especially the numbness and memory issues. Tests that have been done are:
HAE/AAE - c1 normal during and not during attacks.Rheumatoid arth - normalMRI for MS - normal (but not done with contrast) - will be seeing neuro.
Current test being done this week - tryptase to check for Mastocytosis (including urine histamine test).
What are your thoughts on this? WHat other things should I be checked for? Will I ever have a diagnosis for this?!?