Medically Induced Hypochondriacal Hysteria?

(I’m not a doctor. These are my experiences, and things that I am learning–as I understand them. I add links that I feel are reputable or scholarly sources. I am not a doctor, use common sense.)

During this whole hair loss process I have made it a point to not do too much medical internet research. You know that person that reads a list of symptoms on the internet and becomes convinced they have everything from Alzheimer’s to Zollinger Ellison Syndrome. I am that person.

About three years ago I was at work complaining that my hands were swelling. (Sometimes they’d swell so much that I could hardly make a fist.) One of my co-workers began hollering
that I had lupus, because her sister-in-law has lupus and her hands looked just like mine. So began a month-long medical research campaign, culminating in positively diagnosing myself with lupus. Completely convinced and completely freaked, I went to see Dr. J, my primary care. He ran a blood test and 2 weeks later laughingly announced that I definitely did not have lupus. Then he bitched about my cholesterol levels and sent me home. Little did I understand then that lupus was very difficult to diagnose and you cannot get a diagnosis from one single blood test. Assuming I was a hypochondriac, Dr. J simply dismissed me as a woman, dismissed my fears, and disregarded my symptoms. I felt ridiculous.

Over the last five months I’ve been determined to not let this happen again. Internet research is limited and no self diagnosing. But as it turns out, I don’t need the internet…I have doctors. Doctors who are completely capable of scaring me into complete hypochondriacal hysteria.

My endocrinologist, Dr. R, is telling me I have an autoimmune disease. Dr. R says that I probably have lupus, or possibly RA, Celiac’s, Crohn’s, Addison’s, or Sjogren’s. WHAT?! He’s also still insisting there is a critical issue with my gall bladder. It did, in fact, seem that the pain in my abdomen had gotten worse. I found out my cousin recently had her gall bladder removed. Then I learned that my grandmother began vomiting bile when her gall bladder burst, and she was saved from death only by an emergency surgery and week’s stay in the hospital. Yes, I finally turned to the internet, and of course I have gall bladder disease, it all makes perfect sense now! I had the HIDA scan done and for the next two weeks I walked around with certain death looming over my head as I envisioned a gall bladder explosion of showering green bile and me crumpled on the floor, clutching my gut, saying, “See, I told you I was sick.”

In the meantime, I visited Dr. Q, my new rheumatologist. Over the next 3 visits she ordered x-rays, MRI’s, and extensive blood testing. The good news is, she didn’t see any lung cancer in the chest x-rays. The bad news is, she claims I have rheumatoid arthritis. “But that doesn’t explain the hair loss, right?!” Dr. Q put me on Prednisone for a month.

Lupus is a “multi-system disease” and can take years to actually diagnose. The problem is the symptoms come and go, blood levels change, and it takes time before enough symptoms indicate the presence of a multi-system disease. To further complicate the issue, lupus mimics a slew of other diseases or conditions and there is no single test for it (as Dr. J had led me to believe).

According to the Lupus Research Institute, to help diagnose lupus doctors use past medical history, lab tests, current symptoms, and a list of 11 criteria. A person has to have at least 4 out of the 11. I have 5, possibly 6. And of the 23 symptoms I have 14. I have tested positive for ANA and protein in urine. But my other lab work has been negative. Dr. Q is not definitively saying that I have lupus; she’s saying I’m “on the fence,” I’m “not a clear-cut case,” I could have “a little lupus” with my RA.
A “little lupus?” is that like a “little pregnant?” She referred me to some famous lupus guru at John’s Hopkins. But that doctor won’t see me until there’s an actual diagnosis of lupus first.

Dr. Q doesn’t want to diagnose lupus, but she has prescribed Plaquenil. Hydroxychloroquine, an anti-malarial drug, purportedly wonderful for both RA and lupus. But there are some rather off-putting side effects, one being HAIR LOSS. (Uh, did we forget what started me down this dark path of doctors?) And the scariest side effect? BLINDNESS.

According to my eye doctor, the earlier form of this drug was extremely dangerous but still the danger of this drug is dosage. If the dosage is not correct, you can develop retinal toxicity and damage your retina.  You must have an eye exam every 4 to 6 months while taking this drug. However (COMMA) by the time the damage is detected and the drug is stopped, they can not reverse the damage already done, but they may be able to stop the damage from progressing. I’ll repeat so that it’s clear, “They may be able to stop the damage progression.”

Dr. Q doesn’t want to say lupus, but she’ll jump right in to prescribing the scary lupus drugs as if they were skittles? I agreed to take the steroids for a short period, but I’ll pass on the super scary drugs, for now anyway.