Sjogren’s Syndrome – Introduce yourself and meet others

I have swollen, achy parotid (?) glands on only one side. I'm not even mentioning it to anyone because I have other more serious problems that need to be attended to. It sure sounds like you are doing everything that could be helpful for the dry mouth. The Evoxac has been the only thing I've tried that actually worked. Good luck in finding a solution for relief.

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@eileenb1022 I’m really sorry that you’re in the middle of trying to find a good doctor. Once you find a doctor, be sure he/she knows that you think you have an autoimmune disease. I kept telling the doctors to “think outside the box.” None of them did, but maybe they learned that they should.

To help your doctor find out if an autoimmune disease is causing your symptoms,:
Learn about the health conditions in your family history. What health problems did your grandparents, aunts, uncles, and cousins have? Write down what you learn and share it with your doctor.
Keep track of your symptoms, including how long they last and what makes them better or worse. Share your notes with your doctor.
See a specialist who deals with the symptoms that bother you most. For example, if you have rash, see a dermatologist (skin doctor).

I know that you have a wait before your appointments, but you can put it to good use. Do as much thinking and planning as you can!
Have you come up with a list of questions for the doctor when you see them?

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Good morning,
I hope i prounouned that right. my sinus doctor who i went to for repeated sinus infections which i have been on like 4 different antibiotics which never really helped. i did have a ctscan of my sinuses he said it only showed mild sinus issues. bigger problem which he referred me to a rheumotologist is for sjorgens syndrome. honestly i was hoping it was just allergy related(which i go through in october) but he mainly referred me due to extremely dry mouth which just seems to be getting worse. i drink as much and a lot of water and non caffeine drinks as i can and i constantly have to drink because my mouth is so dried out, sore throat also(i have no more tonsils) and then yesterday i noticed my glands were a bit swollen and it was almost impossible to eat even though i was really hungry. my rheumotology appt if you can believe isnt until feb. there is no way with all this i can wait that long. i see a new pcp not far from this sinus dr. my husband insists i ask for a mri of my throat and glands i cannot wait. im just gonna try to get through the next 2 weeks. since dr's for the last yr havent listened to me im hoping they will let him in to this appt. i also have hypothyroidism which was out of whack for several months but my levels now seem back to normal. i was also diagnosed with linear endrocine cell hyperplasia with the possibility of autoimmune gastritis but then after that GI blew me off so seeing a new one in boston in nov. i dont have faith in that so i want himto redo all the testing but this swollen glands/mouth thing is driving me crazy. anyone here with similiar symptoms or have sjorgen syndrome? did you have a mri or go to a rheumotologist to be diagnosed? can a pcp diagnose you or do you need to see a rheumotologist? any feedback would be much appreciated/ thank you.

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Hi Eileen,
I was diagnosed with Sjogrens due to dry eyes and a referral to a Rheumatologist.
The diagnosis is made by labs and symptoms.
I too have days where my lymph nodes go up but it’s normal with Sjogrens.
I pay attention to my body and slow it down when my symptoms worsen. Hopefully you are using lubricated eye drops; there are mouth washes made specifically for dry mouth also.
You may get in sooner to see the Rheumatologist if you can get your new PCP to call and ask if the Rheum could see you urgently. Looking at your symptoms you really need to get in!

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I was diagnosed with Sjogren's several years ago by my rheumatologist. All my mucous membranes were exceedingly dry especially my mouth to the point that I could barely talk. She prescribed Cevimeline (Evoxac) 30 mg twice a day. It resolved the problem. My dentist now prescribes it for me since without it I probably wouldn't have my own teeth by now.

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One caution about cevimelene. It increases secretions, including the secretion of stomach acid. It gave me acid reflux.

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wow. you sound like me. i have more specialist appointments. several issues healthwise i need to get figured out. its hard because of course there is a wait to see these specialists and its hard .i just noticed the swollen glands/neck the other day. what is the "Evoxac"? i never heard of it. i am trying to do what i can to get by for now. my sinus dr. who i saw last week, at that time i was still trying to get a hold of the rheumotologist he referred me to so he ordered some autoimmune bloodwork. all 4 came back negetive one someone suggested to me its a sjorgens test i guess, ana it was negetive as was Rheumatoid igg, sedimentation Rate (ESR) and c- reactive protein, all negetive. so i know there is probobly more i need done but im baffled whyi have all these symptoms the sore throat with the swollen neck/ throat is the worst.

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It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome (2015), a fractured hip (2016), a spinal stroke (2018; for a while I was paralysed from the chest down)), 2 fractured vertebrae and a huge infection at L2 due to part of the facet joint crumbling (probably happened during the fall that also caused my fractured hip, but only discovered late last year). And in the last few years, also dry eyes, nose, mouth, throat...well, basically everything. Process for the Sjogrens diagnosis is still ongoing due to covid (everything takes longer now)- the only thing I still need is the salivary gland biopsy (the CT of the gland showed a disturbed pattern). Sicca has been diagnosed by ENT doctor. This foul small in my nose and taste in mouth started after my own covid infection (March 2020)- could be related, or maybe not. Had tests for covid and diabetes (negative). Nothing wrong with my sinuses either and I have the feeling it's coming from my stomach acid reflux probably due to gastroparesis (apparently some people with Sjogrens get that). Also, because I don't have much saliva, the stomach acid makes a comeback (haha) undiluted, so that might very well be the reason. Starting to change my diet (less coffee and fizzy drinks, less fatty or spicy foods, eat smaller portions more often) and take antacids (Rennie). How do I cope? Some days better than others. Having work that I do with passion helps a lot to distract me from the nerve pain I have since the neurological stuff happened (but not from the foul smell, regretfully) and I have a lovely husband who helps me as much as he can. The thing I regret most is that I can't walk on my own again since I lost my balance due to the stroke. But I have a very cool Alinker walking bike (pictured) and Nordic sticks for short distances. I guess I just take it day by day and try not to panic too much if a new symptom appears. I'm 68 and plan to live for at least 20 years more 😉

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Lab tests for Sjögren’s can be negative in 20% of people who do have Sjögren’s. So you cannot dismiss the possibility of having Sjögren’s. I tested negative but was positive through a lip biopsy.

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I'm not dismissing it. I want badly to see the rheumatologist. The one my sinus doctor referred me too can't see me until Feb I really would hate to wait that long. I see new pcp on the 30th, same city, different hospital hoping she can refer me to another one who could possibly see me sooner. I'm dealing with multiple illness and it seems that specialist in general have long wait lists.

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