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Sjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Sep 21 9:28am | Replies (630)Comment receiving replies
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!
Replies to "I'm in the process of getting the official diagnosis of Sjogrens- it's not in my blood,..."
Hello @ninette, if you’ve not been to Sjogren’s Advocate - https://www.sjogrensadvocate.com/sicca, I recommend it. Also, Smart Patients - https://www.smartpatients.com/.
@ninette i cannot imagine having a foul smell and taste around me. How distressing for you! Is your physician able to give you any help for dealing with this? And how long has all of this been going on?
This link to Mayo’s website might have some good information for you.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Can you tell us a little more about yourself and how you’re coping?
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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.