A Few Wrong Turns

Like many of us who struggle with getting diagnosed with more rare syndromes, my journey to a solid diagnosis of chronic hives was definitely a rocky one. Most doctors are used to dealing with straightforward cases and sometimes get stuck in their patterns of practice.

They can have trouble thinking outside of the box when they are presented with new or unusual symptoms and may fail to take the time to research and learn in order to help their patients. This is certainly unfortunate but is a cog in the system that I’ve seen over and over, and from many kinds of specialists.

Back in 2016, I received a diagnosis of hypermobile Ehlers-Danlos Syndrome (EDS). I have dealt with allergies most of my life, and because mast cell activation syndrome, MCAS for short, is common in people with EDS, I was referred to the mast cell specialist. I live in a large metropolitan area and our local university hospital has many leading experts on rare conditions, one of whom I was referred to in order to confirm or rule out MCAS.

Seeking a diagnosis

My appointment started with a barrage of questions from a medical student. She asked me all sorts of questions about my allergies, reactions I’ve had, and why I thought I had MCAS. I could tell from her demeanor during this interrogation that she was less than convinced that MCAS was my problem. Before Dr. Expert came in to discuss MCAS with me, the medical student consulted with him in the hallway, sharing my answers to the many questions she asked me.

And then, Dr. Expert came in to interrogate me himself. From the moment he set foot in the exam room, I could tell that he was already convinced I didn’t have MCAS. He briefly went through the same questions the student had asked me, and finally declared, “There's no way you have MCAS, you foolish girl. Just because you have EDS doesn’t mean you have MCAS too. How preposterous that you think this is what you have!” He then proceeded to laugh as he exited the room.

Okay, so maybe that’s not exactly what he said, or how he left the room, but the insinuation was clear as day. He was certain that I didn’t have MCAS and he had no intention, whatsoever, to pursue any further testing or diagnostics. Basically, I had wasted his time (and mine!) And that was that. I left feeling like a fool and that I was in fact crazy to think that I had this disorder.

Getting a second opinion

Fast-forward a year or so, I began having these episodes of severe facial swelling. For the most part, they were brought on by being overheated or out in the sun too long, but there were other occurrences that didn’t seem to have a specific trigger. I decided that I should get a second opinion about my hives and what could potentially be causing them. So, I set up an appointment with another allergist who happened to be practicing at the children’s hospital that was associated with the university hospital.

I don’t remember much about the 3-4 appointments I had with this particular physician. I remember that he did some more blood work, checked different antibody levels in my system, and did a workup for a few other miscellaneous conditions. But after a few months, I realized that I was no closer to answers than before. Having ruled out different causes for my symptoms, this doctor seemed to have no desire to help me pursue any further investigation of my problems.

After a few months, the swelling episodes in my face stopped happening. So, once again, I decided to drop it; again feeling crazy and questioning whether something was truly wrong or not. After all, most of the tests came back “normal”.

Check out my article on getting a third opinion and find out what happened next!