The short version of this health update is the sarcoidosis in my heart is worsening. Various unpleasant and debilitating symptoms which started end of July 2017 have increased considerably, leading one doctor and myself questioning if there is CNS sarcoid involvement. A repeat Cardiac PET Scan on February 16, 2018 compared to the first one done in October 2017, in addition to abnormal lab results has my team of doctors mystified.
MRI of brain, vestibular testing, chest scan all normal. It's possible the rheumatologist tapered the prednisone too much. It's also possible my sarcoidosis is methotrexate-resistent.
Symptoms which distress me greatly are disequilibrium all the time unless I'm not moving, disordered and confused thinking, bone pain, muscle weakness, taste buds shot, trouble sleeping, visual problems, GI problems, numbness in one hand and soles of both feet. I check all of these off at every doctor's appointment. I am beginning to think no one reads the five or six pages it takes me a long time to do.
The cardiologist continues to be my best resource and has found one doctor in the state I reside who knows cardiac sarcoidosis. I have an appointment in two weeks. He is part of a University Medical Center with other doctors who are studying sarcoidosis. Glimmer of hope faded after I tried calling the main number and got a car dealership in Ontario, Canada...three times.
When I finally reached someone via a circuitous route (by calling a random researcher listed as staff), it took two hours of being on hold, getting disconnected, then finally a human! The human was eating something and asked me to spell sarcoidosis, which bothered me. It bothered me more when she told me I needed to see a pulmonologist "because that's where you get that disease."
The absurdity of the situation, or perhaps my latent New Yorker attitude kicked in and I told her politely but firmly that I was in no mood to explain the complexities of the disease; I just wanted an appointment as soon as possible. I was told three months for new patients. I dropped the researcher's name and my cardiologist's name. Ten minutes later I got not only an earlier appointment but one with the second doctor on the same day.
If there is one thing I've learned in life it's hope for the best but be prepared for the worst. But, also know that anything is possible. There's no way to know how good or bad experiences can become until you're in the midst or afterwards when you can reflect.