Small Fiber Neuropathy Is Going Undiagnosed in Sarcoidosis

With 92 degrees forecast, I headed out for a walk Thursday morning to beat the heat. Within minutes, I had to quit because of a sarcoidosis-related condition that required stubbornness to get diagnosed.

Trudging home, fearing I would faint, I recalled the physician who told me, “Not everything is sarcoidosis,” when I first described ongoing lightheadedness and other symptoms. It took several more years and doctors to determine that in my case it was.

Small fiber neuropathy, which results from damage to the peripheral nerves, is common in sarcoidosis. It substantially impacts quality of life, according to the 2017 study “Functional and symptomatic burden of small fiber neuropathy in sarcoidosis,” published in the European Respiratory Journal. Yet many like myself go undiagnosed.

Doctors were baffled by my numerous symptoms, which included dizziness, lightheadedness, pain, fatigue, cognitive issues, and numbness and tingling. Five neurologists told me they weren’t related to my sarcoidosis, which was diagnosed in 2002. I believed they were and kept searching for answers.

A questionnaire I hastily filled out after an examination at the Cleveland Clinic in 2011 unraveled my mystery. It indicated the likelihood of small fiber neuropathy, which was confirmed through a quantitative sudomotor axon reflex test, or QSART. In 2016, I was additionally diagnosed with postural orthostatic tachycardia syndrome, or POTS, which affects the autonomic nervous system. POTS explained symptoms I didn’t even realize were connected to small fiber neuropathy, such as my heat intolerance, low blood pressure, syncope, and gastrointestinal and bladder issues.

Aches are also the norm for me, like many others with sarcoidosis. In a 2017 survey, the majority of sarcoidosis patients reported chronic pain despite treatment, which may indicate undiagnosed neuropathy, Dan Culver, a sarcoidosis specialist at the Cleveland Clinic, said. In addition to pain, many also had other signs of nerve damage, such as vision and gastrointestinal problems, muscle weakness, temperature swings, and sexual dysfunction, Culver said.

Culver recognized small fiber neuropathy symptoms in me after examining me in 2011, which was why he had me fill out the small fiber neuropathy screening list that led to my diagnosis.

Symptoms related to small fiber neuropathy were the second most reported by sarcoidosis patients in Denmark, Germany, and the Netherlands. In the three countries combined, 86.2% reported such symptoms, according to the study “The Burden of Sarcoidosis Symptoms from a Patient Perspective,” published in the journal Lung in 2019. Fatigue was the most commonly reported symptom. 

My small fiber neuropathy was overlooked by previous physicians because they were largely searching for evidence of neurosarcoidosis. I had MRIs of the brain, nerve conduction studies, and examinations for inner ear issues. Other physicians insisted the symptoms were depression or the result of medications I was taking.

In addition to a QSART, the Cleveland Clinic performed a thermoregulatory sweat test and a tilt-table test at their autonomic laboratory to reach a diagnosis. 

***

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.

Street appeal: Jim Bachor has been filling potholes in Chicago with art since 2013, CBS News reported. He’s filled nearly 90 potholes with his creations, including recent mosaics we all can relate to — toilet paper and hand sanitizer. 

Driving in business: Walmart is offering a virtual camp and drive-in movies to entertain families this summer, according to RetailWire. Celebrity-led virtual kid activities, which can be accessed for free on Walmart’s app, began July 8. Actress Drew Barrymore, actor Neil Patrick Harris, and basketball star LeBron James all pitch in. Walmart has also partnered with Tribeca Enterprises to transform 160 parking lots into drive-in theaters to show movies. The movie series runs through October and costs $26 per vehicle or $35 for a double feature. Families can order online and have concessions delivered to their vehicles prior to screenings, RetailWire reported. 

***

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.