So, overall I feel that I’m finally getting some answers from Mayo (Jacksonville). The rheumatologist, Dr. Wang, believes my Sjögren’s is a systemic disease and that it may be responsible for both my POTS and my longstanding, severe gastrointestinal dysmotility through its effects on the autonomic nervous system, particularly the small nerve fibers. He explained that Sjögren’s can damage nerves as well as the moisture-producing glands, and that although some established damage may not be reversible, treatment may help control the underlying inflammatory process and prevent further injury. Today I had formal autonomic testing, including a tilt-table test and quantitative sweat testing. The tilt reproduced my symptoms and documented significant orthostatic tachycardia: my heart rate increased by an average of 41 beats per minute while upright, without a significant drop in blood pressure. The sweat testing was also abnormal, with markedly reduced or absent responses in several areas of my legs and feet, consistent with sudomotor small-fiber dysfunction. My CASS score was 3, reflecting sudomotor impairment, while the cardiovagal and adrenergic components were normal. So although the testing did not show generalized autonomic failure, it did provide objective evidence of autonomic dysfunction. Importantly, the results are compatible with Sjögren’s-related autonomic neuropathy, although they don’t establish Sjögren’s as the definitive cause. Most of the routine bloodwork I’ve received so far has been reassuringly normal, including my blood counts, creatinine and sedimentation rate, and my rheumatoid factor was negative. However, these results don’t exclude systemic Sjögren’s or autonomic neuropathy. I’m still waiting for the outstanding Quest results, including complement levels, inflammatory markers and immunoglobulins, which have been frustratingly delayed. Dr. Wang also wants additional screening of my lungs and kidneys to evaluate possible systemic involvement. The severe constipation and other gastrointestinal symptoms remain an important unresolved issue, and I’ll be returning for more extensive GI testing in January. We also discussed treatment possibilities, including newer approaches, but I don’t yet have a definitive treatment plan. My biggest takeaway is that Mayo has identified measurable autonomic abnormalities and a plausible connection to my Sjögren’s, which is encouraging because it gives us a more focused direction for further investigation and potentially treatment. I’m still feeling quite unwell, but I came here hoping to understand what’s happening and what might actually help, and I feel I’ve made meaningful progress toward that.
