Hi everyone. I was diagnosed yesterday despite being SSA-negative. I’m also struggling with neuropathy and dysautonomia. I’ve read about two Sjogren’s phenotypes: SSA-positive (higher organ risk) and SSA-negative (less organ risk but more fatigue, neuropathy, and dysautonomia). Since I have severe fatigue and dysautonomia, I’m curious if seropositive patients here have these too. It seems like a common topic on this sub, so maybe we aren’t that different?
I’m seropositive, but I don’t have neuropathy or dysautonomia. My symptoms are mostly limited to dryness.
Could you share how your diagnosis went? I’m waiting for a rheumatologist, but since my ANA was negative, I assume my SSA will be too. I have positive ocular staining, Schirmer’s, and low salivary flow, plus dysautonomia and fatigue. I’m thinking about a lip biopsy but I’m scared they’ll dismiss me.
SSA positive with a 1:640 ANA. My pattern was speckled but recently switched to nucleolar. I have SFN, extreme fatigue, and severe dry eyes requiring Restasis and steroid drops twice daily. Also dealing with joint pain, severe dry mouth, and potential liver issues. My blood work was all over the place! I see my rheumatologist later this month to discuss it.
Negative for SSA, but I have neuropathy and fatigue.
I’m waiting on lab results until Monday, but my Schirmer’s was positive. My rheumatologist noted my constant water drinking and dry mouth during the exam. He said even if the labs are negative, he’s comfortable diagnosing me based on symptoms. I already suspected it. I have confirmed dysautonomia, neuropathy, and fatigue.
I’m SSA negative, but my symptoms have worsened over the last 10 months. My ANA has been positive for about 5 years. My doctor ran an early Sjogren’s panel which showed positive antibodies for Salivary Gland Protein 1 and Parotid Secretory Protein. Even though those tests aren’t universally accepted yet, my doctor is 99% sure it’s Sjogren’s since everything else was ruled out.
I’m SSA positive and experiencing neurological issues, including autonomic symptoms. My tilt table was normal, but we suspect dysautonomia or SFN. Most of my issues are systemic rather than the typical dry eyes/mouth. If my bloodwork hadn’t been positive, getting a diagnosis would have been much harder.