Sjogren’s Syndrome – Introduce yourself and meet others

Hi @nanke99 Have you learned any more about the submandibular salivary gland? If you don’t mind saying, what did the head/neck specialist say? Becky

Hi Becky. Thanks for circling back! Sorry it's taken a few days for my response- I've had some other things going on. Ok so, I have seen the specialist at Weill Cornell, who did a blood test for Sjogrens markers, which was negative.
Next week I get an MRI Obits with and without contrast, and hopefully that will give us some answers.
I appreciate you checking back in, so feel free! Thanks! Nancy

Becky, I don't think I saw this 1st message from you- sorry! I just responded to your other one.
Re.; toxic exposure- yes, I am a 9/11 survivor with significant dust cloud exposure and some long term environmental, as a resident.
The reason I specifically wonder about this with my salivary gland, is that I have been told my mass is unusual, and I also have very specific memories about the taste of ash and chemicals in my mouth- for weeks. "I can't get the ash out of my mouth". It was very disturbing, and still is to remember, but that's the connection. I am a member of one of the WTC clinics here in NYC, and have notified my GP there. Once I get my next test/MRI results, I'll get opinions from their ENT as well.
Nancy

Thanks to all comments suggestions

I have had very enlarged submandibular and lacrimal glands in the past, many times. Prednisone is the only thing that takes the swelling down to normal. I have had to take 5 mg. of pred a day to keep glands in check. Still very dry mouth though.

thanks. what is the cause of this swelling and what kind of tests did you have done?

Rheumatologist thought the swelling was due to my Sjogrens flare but no invasive tests were recommended.

Hi Everyone, I have had Sjogren's symptoms all my life but wasn't diagnosed until 30+ years ago. My dentist has told me to only use Biotene products and they have really helped. My ENT has me using a heating pad on my non-functioning parotid glands. I don't understand why doctors keep testing to see if you have Sjogren's as you never get rid of it. I have had results that show my Sjogren's is gone- I wish it was! I have learned over the years to give into my flares. Otherwise, they last longer. Just make sure you see a good opthomologst and keep using eye drops. Take care.

My sister-in-law had this and her jaws swelled up for a year or so and since she my ex I don’t know how she got rid of it. I’m sure that’s horrible. I don’t know if she was on some kind of medication or not.

My sister in law had surgery for an over bit many years ago and I thought that might be a tributing factor some how.