Sjogren’s Syndrome – Introduce yourself and meet others

GM, I too have Sjogren's as a result of an infection late 2018. I'm seronegative and had a neurological presentation first with dryness later so getting diagnosed was a challenge. Finally was able to get to Mayo and they recognized my symptoms and did testing which other docs would not because of my seronegative status. So had positive lip biopsy, positive tilt table, positive punch biopsy for small fiber neuropathy, and the list goes no. It is a difficult disease to live with at least for me. Getting to a major medical center is my best advice for someone having difficulty getting diagnosed. Just wanted to introduce myself and say hello:)

And hello to you, @lilymol ! I’m so glad you were able to get to Mayo for a proper diagnosis. And i really agree with going to a major medical center. That’s what i had to do. None of the local doctors knew what i had or how to treat it, so I went to the university hospital and the doctors there knew exactly what to do. Yea!
Do you find that your local doctors are willing to follow Mayo’s plan of care?
I hope you’ll stick around and help others who are fighting sjogrens!

Hi it is a struggle to find docs locally that support/agree/understand that Sjogrens is a disease (not a little dryness), that you can be seronegative, and that it can cause SFN/POTS/dysautonomia/bone-jt-muscle pain. I joined the Sjogren's foundation, follow Sjogren's Advocate, and now Mayo Connect in hopes of learning about my disease and staying current with the research. Thank you for the warm welcome!

@lilymol If you like doing research, have you tried ‘google scholar’? It’s a more in-depth search engine. You might also be interested in some information @athenalee found on Sjögren’s syndrome:
https://connect.mayoclinic.org/comment/664360/
Would you mind sharing the web addresses for Sjogren’s Foundation and Advocate? They would be great to have for others just joining Mayo Connect!

Thank you for the resources.
Here are the links I mentioned in a previous post: Sjogren's Foundation: https://www.sjogrens.org/
Sjogren's Advocate: https://www.sjogrensadvocate.com

I'm in the process of getting the official diagnosis of Sjogrens- it's not in my blood, but I don't produce any tears, have very dry eyes, nose, mouth, skin, everything, my salivary gland CT came back as 'bad' and I will have a biopsy of the gland next month. I also have neurological, muscle and joint issues. One thing that bothers me lately is a foul taste in my mouth and ditto smell in my nose, very sweet and sickly. It comes closest to the smell of fresh (not infected) urine. No headache or sinus pressure, so maybe the dry sinuses are to blame? It drives me nuts. I put some mint cream under my nose to try and mask the smell, I drink a lot of water each day, but what else can I do? Does anybody recognise this? Thank you all for your feedback!

I am not sure of your symptoms, so ask your dr. To test for sjogrens they take a biopsy of your salivary gland. The side affect is it will hurt for awhile when you eat, getting salt in it. My rheumatologist has made sjogrens my primary disease as it can rupture your organs. Although I have ms. I have many issues.

That's why I asked for a salivary gland test (taken just underneath the ear) instead of a lip biopsy. I like my food to much 😉

Hello! I am in the process of getting an official diagnosis as well. I am a 58 year old woman who has had extreme vaginal dryness, dry eyes, dry skin and joint pain for almost 30 years. My vagina even with treatment is so dry it bleeds, my eye test is positive. I also have an appointment for a lip biopsy and to see a rheumatologist. I have fibromyalgia, underactive thyroid, hearing loss, trigeminal neuralgia, and peripheral neuropathy. For the dry mouth, my dentist has recommended brushing and flossing 3 times a day. Also, Xylimelts, Gengigel, Opti-rinse, and x-pur remin toothpaste available at any Shopper's Drug Mart or on Amazon. I would also get a good dental check-up. Sorry for all the advice, was a RN for 37 years. My problem is telling people. I find people either go overboard with sympathy or completely minimize it. So I have decided to only talk about it with certain people and get some professional help. Thank you for listening to me.

Thank you for your reply, I hope you get your diagnosis soon. Well, apparently for Sjogren's there's no such thing as soon, but chat rooms like this one might one day change this. I get what you're saying about people's reactions. But then, they probably have their own cross to bear, so as long as we find some people who understand, we're fine. Have a nice weekend!