Sjogren’s Syndrome – Introduce yourself and meet others

@colleenyoung
Hi Collen, I'm trying to find a specialist at Mayo Clinic Rochester for my peripheral neuropathy likely due to Sjogren' syndrome. I live in Twin cities. My symptoms started with small fiber peripheral neuropathy(based on EMG). I have seen a Neurologist and a Rheumatologist at Twin Cities and awaiting a lip biopsy. I do not have any Dry eyes (Sicca symptoms). My Rheumatologists have suggested a second opinion for Sjogren's associated neuropathy. Is there a Neurologist/Rheumatologist/collaborated clinic that you can suggest at Mayo Clinic Rochester so I can make an appointment. Thanks.

Hello to All, I am happy to see this group. I developed dry mouth about three months ago and self-ordered an Early Sjogren's Profile (on sale). Results returned with a positive reading. My mouth becomes dry after meals mostly. I have found that after brushing my teeth I get good relief by using my night guard during the day following meals. I have been using a XyliMelts Dry Mouth Stick-On Melt while using my guard too. My eyes for the most part have been OK. I have other issues like poor oxalate tolerance, but this has been so longstanding I don't as of yet know how it ties in, or if it even does. I hope to gain some insights by reading back on your posts (I have by the way booked an appointment with my Internist).

@colleenyoung Hi, my name is Beth and I was dx with sjogrens via blood test. My pcp was up against a wall trying to dx all my symptoms and so she ordered every autoimmune disease bloodwork. So I have this one and autoimmune inflammatory disease which I guess helps explain my overall chronic pain for too many years.
Actually my eye dr told me years ago I probably had sjogrens bc of my sever dry eyes and my reporting a dry mouth and always sipping on something.
I have tried to get help in the city I live in those rheumatologist turned me down due to what they thought my pcp could handle. Shands denied my referral so my pcp sent a lot of her notes with the referral and they would not even look at it bc they had denied it b4. So finally she sent it to the Mayo Clinic and I have an APPOINTMENT! My symptoms are: extremely dry eyes and mouth. My mouth Hurts it is so dry. My skin has become very very dry and rips open at the least bump and then takes forever to heal.
I’m so glad to be here on this and look forward to any suggestions and help. God bless you all.

I have Hashimoto’s and thought dryness was either Menopause or Hashimoto’s but now I have the joint and tendon pain all over. Sometimes my eyelids stick to my eyeballs at night and can’t open for a bit. I need to go to a rheumatologist just to eliminate something and try and figure out what is going on. I also have the icy fingers and toes like Raynaud’s.

@cmtg Weird but I haven’t been diagnosed yet but have many of those symptoms including ear issues.

@jillnc I worry about Prednisone and Osteoporosis. I am already close and the thought of Prolia along with everything else gives me anxiety.

@loyd1957 me too. All of the above

@graveltruck my sense of smell is also very weird and so is my taste.

@gqadri2002
I was diagnosed with Sjogren's in 2011. In 2024 I told a DPM (podiatrist) about the stabbing, electric shock feelings, and the sensitivity in my feet. He did biopsies on both feet and diagnosed peripheral neuropathy. I then requested a neurology appointment at Mayo and sent the records and biopsy results from the podiatrist, as well as the Sjogren's diagnosis. It took a while to get an appointment, but I ended up seeing Dr. Sarah Berini at Mayo, Rochester. She did a number of tests on my feet and then ordered a battery of additional tests, some of which were unpleasant, but necessary, in order to develop a correct diagnosis. She determined that I have Sjogren's related peripheral neuropathy as well as autonomic neuropathy. (Autonomic neuropathy is damage to nerves that control automatic functions of the body, like heart rate, blood pressure, or sweating.) Dr. Berini called my rheumatologist in St. Paul to coordinate care and the rheumatologist prescribed an immunosuppressant (CellCept) to keep the immune system from attacking the nerves. I don't know if the scheduling systems allows you to request a particular doctor, but Dr. Berini is outstanding!

Thanks so much. This is very helpful. I was looking at different neurologists profile and came across Dr Bereni also. I will make an appointment with her. Thanks for your detailed informationn.