I am a retired pediatrician who has had personal experience with a condition known as Chronic Idiopathic Urticaria (CIU), a diagnosis which was made after an exhaustive workup which included many visits to subspecialists.
About six years ago, after a long post-retirement trip outside the US including Europe, Africa and several islands off the African coast, I began to experience intense itching all over my body.
The symptoms were randomly distributed on different parts of my body and occurred without any warning or preceding ingestion of food. At times, the itching was accompanied by painful hives (urticaria) and the sensation of having been slapped. It happened more often at night and prevented me from sleeping normally.
My evaluation began with a visit to my internist who suggested that I see an allergist. He explained that even after I would go through an extensive workup, the final diagnosis might still be classified as “idiopathic” (of unknown origin) and “chronic” (not acute).
I wound up seeing a rheumatologist, a dermatologist, a cardiologist and an infectious disease specialist. The dermatologist biopsied the urticarial lesion and sent the slides to a pathologist who was a specialist in CIU. He concluded that it looked like “normal CIU” (whatever that was) but that there were some subtypes of the pathology which occasionally go along with certain connective tissue disorders including lupus or psoriasis, or even worse, certain malignancies such as lymphomas. This fear encouraged me to pursue the workup even further. It has always haunted me that I still had something undiagnosed that was more serious.
At least the infectious disease expert was intelligent enough to ask me the right questions about my possible exposure to certain parasites. After all, I had visited some South Atlantic Islands including the former Portuguese colony of São Tomé where I had walked barefoot on beautiful beaches where wild pigs roamed freely. He ruled out that I had picked up a parasite.
The allergist brought it all together after about six months. He concluded that since no one had specifically found anything wrong, it would be termed CIU which in most cases, the origin is never discovered . By that time, my symptoms were pretty much controlled by daily dose of an over-the-counter antihistamine, cetirizine (Zyrtec) and a dose of a prescription, hydroxyzine (Atarax) for the occasional, but thankfully less frequent and less disturbing painful flareups of the urticaria. He also gave me the option of using omalizumab (Xolair), a monthly injectable biologic treatment, but I rejected this option because the symptoms had lessened with a more conservative treatment.
Several times since then, I have tried stopping my daily dose of cetirizine to see if the problem still exists. Usually within a week, I would start to feel “itchy” and sometimes I would develop some mild hives, but these minor outbreaks are always controlled within a few hours with my plan B medication, hydroxyzine. I decided that it is just easier to continue taking the low dose of the oral antihistamine to keep things under control especially since I don’t have any side effects from the medication
I admit that I still have a nagging fear that there is an underlying problem which caused the original problem. Time, however, is on my side since I haven’t really experienced any acute flare-ups in many years. But having unanswered questions leaves me with the worry that it will eventually resurface and that it may represent something much worse.
But as a doctor, I must tell myself that not everything in medicine has a clear explanation. I have been in the position many times in my career when I had to tell a patient, “I don’t know.” Some patients can accept this fact. Others are upset when doctors admit that there isn’t an adequate answer.
As I get older and the visits to the doctor unfortunately become more frequent, I have to admit that it’s not fun being on the other side of the doctor-patient relationship. I believe that I was the type of doctor who understood patient anxiety, but unfortunately, now that I am the patient, I hope that I can always find the doctors who will fully understand my particular fears or concerns. I will try very hard to accept when my doctors say, “I don’t know.”
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My husband and I watch Dr. Pimple Popper, along with Save my Skin, a British dermatologist program. People have had what you’ve had. Not pleasant.
You know what they say……Herpes (or others) lasts forever.