Seronegative Sojourns

Have you seen a rheumatologist locally? Did they diagnose you with seronegative sjogrens? You should be able to get a diagnosis locally.

Who is “they”? Plenty of rheumatologists in the Dallas area.

I have seen a rheumatologist.
My eye doctor diagnosed me with dry eyes. My mouth is dry constantly getting crowns. I currently need six crowns pretty soon my whole mouth will be crowns from dry mouth been diagnosed by dentist. The neurologist came up with seronegative Sojourns after talking to her and my eyes running the whole time. I have constant nausea/vomiting where I don’t really want to eat. All my joints hurt. I have had avascular necrosis and osteoporosis in both hips along with four left hip replacements and an actebulum fracture three of those were in one year. Really bad muscle spasms and migraines. I had seizures in 2014 come out of nowhere. I have severe axonal sensorimotor polyneuropathy, small fiber neuropathy along with cardiac autonomic neuropathy. My BP is either high or low and O have uncontrollable arrhythmias. Gastroparesis kidney and bladder problem.
This guy in Baltimore specializes in seronegative Sojourns. I live in Dallas had to go to Boston to get answers on the neuropathy. That to me is sad as big as Dallas.

They rheumatologist and research neurologist out of Boston. I could not get answers on my neuropathy. My neurologist died in 2022. I went from seeing him every two months and discussing treatment to just being told to come see them once a year. They refuse to dispense muscle relaxers or do Botox injections. I found out when I went to Boston about the type neurologist I need a neuromuscular neurologist treats neuropathy just and FYI not many in Dallas. I was disappointed in rheumatologist because I scored 13 and he said you had to score 14 to be treated for rheumatoid arthritis. I have discovered not every rheumatologist knows how to test for seronegative sojourns. Some have not heard of it. You have to take a biopsy from the glands. It then is sent off for testing. All they have done is ultrasound. So unless the rheumatologist knows how to test for it it’s a waste of my time to keep going to see them. I have a family history of rheumatoid arthritis my mother, grandmother and my nephew was born with juvenile rheumatoid arthritis. He is now 29. Pretty good indication I have it. For the first time ever the rheumatoid doctor did ultrasound on my wrist and hands and told me I have alit of inflammation duh tell me something I don’t know. He wants me basically on a vegetarian diet. No milk, flour, eggs, sugar, grain,corn and so much more nos. I was thinking what I could have for breakfast. No oatmeal (grain/white flour/no flour period) that removes pancakes, no eggs, I already don’t eat pork, and no cereal, no homemade cinnamon rolls.
I can have no hormone chicken, turkey and wild caught fish only no farm raised. 90%percent fish farm raised with hormones.

Rheumatologist-not very good
Neurologist
Cardiologist
Electrophsiologist
Research Neurologist (Boston)
Dr Anne Oaklander found the exact specialists I needed (there is truly only one neuromuscular neurologist UT Southwestern and a new rheumatoid doctor that would treatment me) without treating the autoimmune disorder they can’t treat the neuropathy. I am almost confined to a wheelchair over the neuropathy. In fact I almost lost my foot.
Eye doctor
Dentist

What a complicated situation - to state the obvious. I might consider consulting with a neurologist to cover off on neuromuscular knowledge and see if he knows a sub specialist or how you might go about identifying one.

I would also consider seeing another rheumatologist perhaps.

I see a neuromuscular neurologist on Wednesday.
I saw a rheumatologist on Thursday last week. I am so discouraged. My Ana, crp, compliant 3 and sed rate all elevated. I test negative for everything but 13 for Rheumatoid Arthritis and I am told you have to test 14. Really one lousy point. Now talking seronegative sojourns because they normally go together.
I have the worst luck with doctors.

Seronegative Sjogrens could explain all your symptoms including neuropathy.
While you await confirmation join the Sjogrens group here and check out the discussions.

@artemis1886 It sounds like you're having really bad luck finding a doctor to help you. Must be very frustrating! Have you tried getting an appointment at a large, comprehensive medical center or university medical center? The doctors there are a bit of a cut above your community doctors. There are also some outstanding hospitals that follow Mayo’s philosophy. Here is a link: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Is it possible for you to try one of these suggestions? Will you let me know how you do?