That doctor is right, you should go to mayo if you can get in, he definitely needs to be replaced! Either that or find a rheumatologist -there is a list of rheumatologists people with AI have recommend on the Sjogren’s advocate site.

This is very consistent with the experiences of many who have tried for years to be diagnosed - usually with some auto-immunity that causes shifting pain and random symptoms that come and go. Doctors can’t always label it or clearly identify bio markers but need to look at the whole picture of what is happening in the person’s body over time. Many don’t want to take the time. Many of us are not believed.

Don’t give up!

There is a person called Night Bird on smart patients under the topic Sjogren’s who compiled the list of doctors all over the US. You can sign up on the site and then start a conversation or send Night bird a private message. It’s much like connect Mayo Clinic, great source of information from others with health challenges if all kinds.

I am so sorry for your difficulties in finding a decent doctor.

Reading your post again, I noticed your problem with UTI symptoms that are not UTIs. I had the same experience since August took antibiotics then they sent the cultures out and no bacteria. Found out from a gynecologist that I have urethral prolapse (I’m 68), in addition to vaginal atrophy, whose symptoms mimic those of a UT, probably caused by the extreme dryness of mucosa in Sjogren’s patients.

She prescribed topical Premarin (also available generically as estradiol), estrogen cream and within a few weeks I was sleeping again urgency and frequency diminished and pain gone. Worth a look. Also Sjogren’s patients often develop Interstitial cystitis. It is a systemic disease as are other AI diseases so can possibly affects all organs.

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