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Sjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 3, 2023 | Replies (621)Comment receiving replies
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.
Replies to "Good morning, I hope i prounouned that right. my sinus doctor who i went to for..."
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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Good morning, @eileenb1022. As with any new diagnosis, you have a lot of questions. Well you've come to the right place. You'll notice that I moved your message to this existing discussion:
- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/
I recommend reading through the discussion from the beginning. Some great advice and you'll meet many members who also have experience with Sjogren's syndrome like @cantek @cmtg @jip499 @ninette @becsbuddy @lilymol @robertjgoldenjr @adlttl123 @dancing1 @oregongirl @jmb73 @rarelybees2889 @marye2 to name a few. Like you, many of them also have multiple autoimmune conditions.
Your questions about seeing a rheumatologist vs your PCP might be answered in this related discussion:
- Is a rheumatologist who I should see about autoimmune conditions? https://connect.mayoclinic.org/discussion/rheumatologist/
Eileen, have you requested to be added to a cancellation list to be seen sooner?