Be Wary of Too Many Specialists

With the involvement of each new organ system, I gained another doctor: rheumatologists, neurologists, dermatologist, opthamologist, optometrist, extra trips to the dentist, vascular surgeon, gastroenterologist, internist, hematologist, orthopedic surgeons, ENT. Liv had an endocrinologist, pediatric opthamologist, pediatric orthopedic surgeon, pediatrician, pulmonologist, a bone geneticist and an ENT. It was not unusual for Olivia and I to have two or three appointments a week, between the two of us. The car was on autopilot: Petoskey, Traverse City, Grand Rapids, Detroit. The appointments alone would have made working impossible.
At a point where eating became nearly impossible, too, I called my internist who was out of the office for the day. A partner agreed to see me. After spending time discussing my case and examining me, he asked if he could be frank?

“You have too many cooks in your kitchen.”

I agreed.

“And each one is prescribing medications. You are getting limited benefits and all of the side-effects.”

I knew he was right. My case was fast becoming a hopeless mess of symptoms and side effects. I had just returned from a disheartening trip to Ann Arbor.



With my immune system repressed, I had been hit hard by a respiratory infection. Doctors added strong antibiotics, but I felt terrible. My energy level crashed. I was hypoxic around the lips and had strange tingly sensations up and down my arms. The night of my birthday, I was struck by an excruciating pain in the back of my head unlike any I had ever experienced. Within moments, I had the sensation of something breaking away and I felt a hot liquid sensation move down my spine followed by pain in one leg. We called Ann Arbor. Fearing vasculitis of the brain, the decision was made for my husband to drive me to University Hospital’s emergency room in the middle of the night. The doctors in Ann Arbor feared if I went to Petoskey, the transfer would take days of precious time and the risk warranted the trip. We dropped our girls off at my parents and I said good-bye, not knowing if it would be the last time I saw any of them. I couldn’t lift my head off the seat.

During the week that followed, I was in University Hospital’s ER three times. Over a dozen neurologists, of varying degrees of education, examined me. At one point, we were surprised when the doctor on call told us the rheumatologists weren’t sure I had Lupus. My husband and I were speechless. Lupus had been confirmed by their very own hospital in January, 2006. I had countless tests, an MRI and CAT scans. At one point, doctors felt I was severely dehydrated due to positional changes in my blood pressure. This didn’t make sense, as I was recovering from a spinal tap and had been drinking non-stop. The pain in the back of my head was excruciating and unlike any I had experienced with a migraine. Even my skull was tender. It hurt to lie on a pillow. If upright, I was in danger of passing out. My eyes were bloodshot and I was sweating profusely. The strange tingly sensations continued along my arms. I developed a spinal headache from the spinal tap that showed mildly elevated protein levels and a few wbc.

At the end of the week, I visited U of M’s top neurologist and rheumatologist. The rheumatologist was convinced the MRI of my brain did not show Lupus involvement in the brain and felt my symptoms were more neurological in nature. When one of the residents exclaimed, “But why is her ANA sky-high and climbing?!” No answer. The same intern asked about my CellCept levels being three times the normal amount? Again, no answer, only a stern look. I appreciated her attempt to find an answer. She had the makings of an excellent physician.

With no answers, I was sent to my neurological appointment, where I was told my headache was ruled a migraine variant and my symptoms were more unexplained autoimmune than neurological; unexplained autoimmune, complicated by the stress of caring for Olivia complicated by depression from my own chronic condition. I tried to explain I was not fighting depression and this was unlike any migraine I had ever experienced. The doctor did not feel it could be vasculitis of the brain because the MRI showed virtually no change from the year before. I shared my husband’s concern that we were running out of time to figure this out. He continued to smile and simply reiterated. When I showed him my hands, which had lost most of their muscle tone in a short period of time, he responded that was how I perceived my hands, though an emergency room doctor had expressed concern about earlier muscle wasting months before. I knew we were running out of time, too, and suddenly I realized these doctors were not going to figure it out. It hit like a ton of bricks. My prednisone levels had been raised to 60mg and my body was reeling from the shock. After holding my emotions together over countless appointments, I started to cry, seemingly adding fuel to the depression argument. I left the office reeling with anger, sorrow, and true fear. I hardly spoke as my Dad took me home, my thoughts spinning.