The Mistake That Can Hamper Your Disease Management Efforts

Sarcoidosis involves the lungs in most cases, so you may head to a pulmonologist and consider your care handled. I did, but it was only the beginning of sitting on the crinkly, white paper of examining room tables looking for answers. The first lesson I learned was that relying on one practitioner to treat a rare illness is a mistake.

Sarcoidosis is an inflammatory disease that can progress as unpredictably as the areas of the body it invades. I came to realize that the more eyes, the better when it comes to managing it. The early challenge for me was figuring out which specialists to go to for emerging symptoms. 

My initial pulmonologist was interested in safeguarding my lungs, but not the fallout of the treatment. I was placed on a boatload of prednisone and left on my own to deal with the horrendous side effects. My primary care physician got me through, and I found a new pulmonologist who put me on a better path to treatment. 

Navigating specialists for treatment

Eyes: In addition to monitoring my lungs, I was told annual eye examinations would be necessary. Ocular sarcoidosis occurs in about half of cases. I went to a local ophthalmologist who unwittingly taught me my second medical care lesson: Find physicians who have experience treating your illness. It took me years to have subconjunctival nodules correctly diagnosed, which the physician continually dismissed as just irritation from dust or dirt. 

Fatigue: Extreme tiredness is common in sarcoidosis. When I started feeling exhausted no matter how much rest I got, my pulmonologist sent me for sleep studies. That helped to diagnose and develop a treatment plan for my ongoing fatigue. 

Cognitive issues: When I couldn’t remember recent books, TV shows, or whether ordinary words were actual words, I knew I had cognitive issues. Basic testing done by neurologists asking “What year is it?” or “Who is the current president?” wasn’t getting to the bottom of it. I was eventually referred to a neuropsychologist who assessed my level of cognitive functioning through a battery of tests and identified areas of deficit. Unfortunately, he didn’t have solutions.

Pain: Sarcoidosis and aches are a common duo. Efforts to banish mine led me to orthopedists, rheumatologists, and neurologists. My lengthy journey to a small fiber neuropathy diagnosis helped explain some of the pain, as well as many other symptoms. I continue to rely on physicians from all three specialities for care. 

Dizziness: Near fainting upon standing, lightheadedness, and dizziness were ongoing symptoms for me, which took several years to pinpoint. A tilt table test led to a postural orthostatic tachycardia syndrome diagnosis, which is being treated by both a neurologist and a cardiologist. At the urging of readers, I’ve also made plans to make regular monitoring for cardiac sarcoidosis part of my care. 

Bouts with sarcoidosis may be brief and not require any treatment, but if it sticks around, I hope my experiences help you avoid the pitfalls I encountered.

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

• Hip-hop hooray! A long overdue nod to hip-hop arrived this month with the U.S. Postal Service’s release of its latest Forever Stamp. Photography by Cade Martin was used to depict four elements of the culture: MCing, B-boying, DJing and graffiti art, according to Billboard.
• Community fridge: Refrigerators stocked with free food have been popping up outdoors in New York and California to help those in need. They are stocked by businesses, community members, and volunteers, according to news reports. 
• Bumper-to-bumper fun: You won’t have to leave your car to enjoy movies, comedy, live music, bingo, and karaoke as part of an event called The Parking Lot Social. It rolled into Tampa, Florida, on Sunday and stops in several other U.S. cities are scheduled. For more information and tour stops and dates, click here.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.