Sjogren’s Syndrome – Introduce yourself and meet others

@med951 I had been trying for some time. It took 4 faxes to just get the referral there and then a preauthorization. So a lot of “time”went into this. It was not a quick process for me.

@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.

@joebeth I was diagnosed with Primary Sjogren's in 2013 at the Mayo Clinic in Rochester. If you are going to the Mayo in Rochester in November, make sure that you stay at a hotel that is connected to the Mayo's Skyway or Subway system so that you can come and go without going outside. There is an on-line map available that will show you the hotels connected to the system. My rheumatologist at the time made a referral and I had no trouble getting an appointment. I spent one week as an outpatient and they ran tests every day for 5 days and then I met with the rheumatologist to discuss the findings. For me, I have Primary Sjogren's which means it stands alone as my disease and I do not have another autoimmune disease like RA or Lupus which would then classify my Sjogren's as Secondary. It's important to understand whether or not you have Primary or Secondary Sjogren's. There is also a shuttle bus service that runs from the MSP airport to your hotel in Rochester if you don't want to rent a car and drive. It's about an hour south of the Twincities. Since 2013 I have treated by Sjogren's with the AIP (Auto-Immune Protocol) diet which I have modified over the years to now be a completely plant based diet. With this diet I can maintain by CRP levels at 3. When my Sjogren's related kidney disease started in 2018 I moved to St. Paul, MN to be near the Mayo Clinic. I have regular visits at the Mayo Clinic with my rheumatologist, nephrologist, cardiologist (open heart surgery 10/23 for mitral valve) and have a primary care physician in St. Paul. If you are diagnosed with Sjogren's it is not just about dry eyes, or dry mouth, or dry skin. Sjogren's is a systemic disease that can impact other organs, not just your moisture glands. I'm going to hope that you don't have Sjogren's but whatever it is, I'm confident that the group of rheumatologists at the Mayo Clinic will do everything that they can to figure out the problem. I've had nothing but a positive experience at the Mayo Clinic and hope that you do too.

@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.