I have spoken to Ben via YouTube about my experience, but I will repeat myself for the purpose of updating everyone who is not aware of my history.
When I was in the 6th grade (about age 11), I had the shingles and as soon as that cleared up, I began to get a prickly feeling (like fire ants were biting me all over in waves) when I got a hot. I could still sweat and didn’t have any visible signs, other than getting my dance moves on. I was so young when it started that I thought everyone had it until that awkward moment when I mentioned to my mother, “You know when you get too hot and get real itchy because of it?”. When her reply was a very confused “No”, I knew it wasn’t normal. I always was an odd child, but I mean, seriously?
Between it only being more of an annoyance and hearing stories of phantom sensations after having the shingles, I just figured it was that and never sought any medical advice for it. Those assumptions, you know.
I am almost 36 now and over the years, more so in the past couple of years, it has gotten slowly worse. Now I experience anaphylaxis, hives, flushing, fever, only sweat on my face, swelling in my hands and feet, weakness, etc. (every symptom you can imagine), and it covers nearly my entire body down to my calves.
I have had “allergies” (I will explain the quotations later on here) to so many things it isn’t funny. I have IBS-D. I have eczema on my hands and the tops of my feet (only when I wear tight shoes) that is very itchy and causes these tiny blisters that look like wholes in my skin (I can’t remember what it is called). These things along with other health issues have been and become a real pain.
A couple of months ago, I began to go to my allergist. With the oddest luck, they put me in a lukewarm room and I had an attack right in front of her and her staff. She diagnosed (what she called the worst case she had seen…she even has me carry a letter from her around because of it) me with Cholinergic Urticaria, requested some blood work to test for other allergies, and put me on a step program of 4 Zyrtecs, 1 Zantac, and 1 Singular a day and an Abuteral inhaler when I needed it. It has slacked off some, but not gone. She also noticed I had KP and issues with the skin on my face.
I went back the next month to discuss my progress and the results of the blood work I had done. All of my allergy tests came back negative (despite my reactions to these things). She actually didn’t seem surprised because, according to her, most cholinergic urticaria sufferers tend to have negative results to them.
When her nurse was taking my vitals, I was in a tachycardia. This isn’t a surprise to me because I have had an AVNRT ablation for it (which helped but did not take it completely away), have hypertension with episodes of hypertensive crisis, and erratic blood sugar levels for many years. However, this nurse is also a nurse in cardiology and it scared her half to death. I didn’t even think anything of it until my allergist mentioned to me that I scared her nurse because of it. I just laughed and felt so bad for her.
However, it sparked my allergist’s curiosity and she ordered a 24hr urine sample for histamine and metanephrine levels to test me for mast cell diseases and an adrenal gland tumor. I got those results in my MyChart (I go to the Cleveland Clinic system) today and I am not sure exactly what to make of them. I am waiting for an explanation from my allergist in the next few days. Here are the results though:
162 (52-341) ug 24hr
454 (88-444) ug 24hr
616 (140-785) ug 24hr
Histamine nol/g Creat:
506 nmol/L Cr
0-450 nmol/L Cr
Now, if you can make heads or tails out of it, be glad to give me input. I will keep everyone up to date.