Sjogren’s Syndrome – Introduce yourself and meet others

That's like every time I drink water. Only water, my eyes start running tears. How can that be? I also found out that the vagus nerve on left side of neck up to ear causes so many issues I have been having since 2012 where I actually brought it up to the doctors and was laughed at!!! Gets me so angry.

Nothing like discovering a new body part 2022 , one that many people complain about and describe

Tubarial salivary glands, it was a team from the Netherlands
I saw a unilad article summarizing, couldn't send link

The worst of this is that the only reason they didn't research this stuff is because they write people off as old or decrepit or something. That's old school medicine for you. So sad you went through that.

Did you hear about the ekectronic therapy to stimulate the vagus nerve? They have a device they can put on the right ear. There are other physio type devices you could set to that frequency as well.
I have robotics and nutrition background, unfortunately gonna need em both to cure/treat this ... no wonder there was nothing else that the doctors can do, they didn't even look into it. And I wouldn't wish autoimmune neurology and gland issues on anyone, it sucks.
Trying to speak up when I find these new treatments because why should people suffer?
I laugh because autoimmune is autoimmune, I have so much overlap with these other things. They should treat all autoimmune with any approved and helpful stuff that would work best for the patient.
So lucky I have MS, because glatiramir acetate does work for me. I just have what damage was done, and now these gland and muscular things because it affected how my brain even makes neurotransmitters.
I read that opioid addicts also have damage to the parts that make neurotransmitters. Such a hard thing to tweak, no wonder they don't know how to heal 😪

I never heard about the electro stimulation of the vagus nerve until i read up on it in a posting here and further research. When I had my thyroidectomy and left neck dissection in 2012, it was a mess. Surgeon didn't do it. His resident did and nicked my vocal cord nerve and left me with Minnie Mouse voice, inability to swallow food. Then I began to experience pain in left shoulder. Thought it might be the vagus nerve (this was all in 2012!) so I took some Percocet from shoulder surgery a year prior. Didn't help my shoulder but it relaxed the muscles in my throat and gave me my voice back after three months!! The drain for the neck dissection was right along the vagus nerve ! He probably nicked that too!! All these years later now I have leukemia and I have nodes going right up my neck up to my ear, following the drain path. I call them my string of pearls. But they are compressing the vagus nerve and causing all different kinds of issues. Sometimes I take muscle relaxers but they cause constipation which I already have a major problem with, having no sigmoid colon. Of course if I tell my endo she'll say it's not related. Maybe I can get my new primary to do something as he seems to listen to me. Having major problems swallowing. Fricking nightmare. And having chronic leukemia which is a nodal disease......

Thanks for the information, its good to have...

Yes to both questions

My lips are pretty chapped. I put Vaseline on them nightly.

And yes, I have trouble with vaginal dryness. Always have. Couldn’t wear tampons because of it. I’m 64 now, so she makes it worse.

Hi thank you for starting this thread. I don't know if I have sjorgens yet but if I don't I'd be shocked. I see a rheumatologist at the end of February. It was actually my sinus doctor that mentioned sjorgens to me last summer
I never even heard of it. I'm also seeing the rheumatologist for fibromyalga I'm pretty sure I have it it started lastnyear as well shortly after my gallbladder surgery and has just progressed anyway I'd love to talk to others. My sinus dr did do about five antibody sjorgens bloodwork which were normal. My throat though couldn't possibly get more dried out. Then shortly afterward few months ago my eye Dr diagnosed me with dry eyes. I think I have silent reflux too so my mouth/ throat is really a struggle. Thank you for listening.

I’m also getting a Sjogrens work up. I had a salivary nuc med scan that showed my left salivary gland isn’t working correctly. I understand what you’re experiencing. Everything is dry. Can’t swallow food without liquid. I have a lip biopsy tomorrow. This would be my 5th autoimmune disease. I’m nervous! And exasperated that I might have another. Thank you for hearing my rant.

oh anytime! like i said before last summer i never even heard of sjorgens and grateful to my sinus dr for suspecting it but yes mouth is so very dry. constantly having to stay hydrated. iif not my mouth is so dried out. i swear its like no saliva. really eager to see rheumotologist. thanks for writing!