Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I too was struggling with fatigue and my Rheumatoligist suggested I try Accupuncture.
I found a PT who is also trained in China for Accupuncture ( her family has practiced since 1800’s!)
My energy went through the roof! And the depression/ anxiety too!
As well my central nervous system is calm, I no longer shake after Prednisone! I’m so thankful.🥰

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@robertjgoldenjr

What type of issues are you having with your eyes and mouth?

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My eyes are painful and irritated most of the time. I get relief from application of sterile eye drops and twice a day use of Restasis. At night I apply eye ointment. I need to pay attention to my eyes all day to prevent further pain. I use a humidifier in my bedroom at night and goggles over my eyes when I sleep.
My mouth also requires constant maintenance, such as brushing after every meal, and avoidance of sweets and acids. My lips are always dry.

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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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@eileenb1022

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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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?

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@colleenyoung

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?

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Hi and thank you for you help. I will go to the links. I have asked to be put on the cancellation list. Also new pcp is in same city just different hospital I know this hospital has rheumatologist too so maybe when I see new pcp in two weeks I can ask. As far as this other rheumatologist I was a little frustrated. I had to call them 10 days after the referral was sent. Then I had to call three times last week noone was calling me back. They knew why I was being referred and still said Feb 15. That was disappointing
So hoping new pcp can refer me to someone else who can see me earlier. I mean these symptoms have been going on for months every dr got it wrong except for the sinus dr in Boston and symptoms are worsening. Thank you for your help

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@colleenyoung

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?

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Did you repost my post or do I have to start over? Sorry, I am just so exhausted

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@cmtg

Recently diagnosed with sjogrens after 7 years almost. Started out with abdominal pain then dry eyes, dry mouth, sores in mouth that might be related to my lichen planus , joint pain all over, ear ache,.not sure if ear has any relationship. Recently a dr prescribed plaquenel will be on that soon.

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Plaquenil has been known to help many people with Sjögren’s. But it takes 3 or more months before you feel the beneficial effects.

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@eileenb1022

Did you repost my post or do I have to start over? Sorry, I am just so exhausted

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@eileenb1022 I’m sorry if MCC caused some confusion for you. @colleenyoung DID move your comments to an existing discussion that is about Sjögren’s syndrome. You will be able to meet other folks who have sjogren’s and get good information.
I’m glad you feel more hopeful about your new doctors. It is so important that you feel heard and validated. There is so much new information about autoimmune diseases and so many new diseases, that the doctors are still learning. I saw a new neurologist yesterday and when she saw my diagnosis, she said,”wait, what is this? I’ve never heard of this before!” It gave me an opportunity to educate her.
Can you keep some good notes on what is happening and focus on the sjogrens?

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@becsbuddy

@eileenb1022 I’m sorry if MCC caused some confusion for you. @colleenyoung DID move your comments to an existing discussion that is about Sjögren’s syndrome. You will be able to meet other folks who have sjogren’s and get good information.
I’m glad you feel more hopeful about your new doctors. It is so important that you feel heard and validated. There is so much new information about autoimmune diseases and so many new diseases, that the doctors are still learning. I saw a new neurologist yesterday and when she saw my diagnosis, she said,”wait, what is this? I’ve never heard of this before!” It gave me an opportunity to educate her.
Can you keep some good notes on what is happening and focus on the sjogrens?

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@becsbuddy im glad you got my post and i didnt have to start over. yeah my sinus dr the hospital next to him rheumotology can get me in until feb. no way can i wait that long. new pcp who i see for the first time isnt for 2 weeks. but i just messaged my sinus dr's nurse to see if he could send a referral to this other rheum where my pcp is. its in the same city. she said something about out of network which i dont understand she said it wouldnt hurt me to wait another 2 weeks. sigh. it is for me. but this other rheum said i could probobly get in before feb so now seems i have to wait and hope new pcp will hear me. im doing the best i can thank you. id love to hear from others just for the support and to see if they have similiar symptoms. 😉

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@eileenb1022

@becsbuddy im glad you got my post and i didnt have to start over. yeah my sinus dr the hospital next to him rheumotology can get me in until feb. no way can i wait that long. new pcp who i see for the first time isnt for 2 weeks. but i just messaged my sinus dr's nurse to see if he could send a referral to this other rheum where my pcp is. its in the same city. she said something about out of network which i dont understand she said it wouldnt hurt me to wait another 2 weeks. sigh. it is for me. but this other rheum said i could probobly get in before feb so now seems i have to wait and hope new pcp will hear me. im doing the best i can thank you. id love to hear from others just for the support and to see if they have similiar symptoms. 😉

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@eileenb1022 Be very careful if you’re told that a doctor or hospital or whatever, is out-of-network. This means that insurance doesn’t cover for the visit or treatment and it can be terribly expensive!
See if there are any large medical centers or university medical centers in your area (even if it means a drive). That’s what i had to do. No one in this town knew how to handle my autoimmune disease, so we went to the university medical center. Some of my visits are virtual and some in person. Another mentor drives 2-3 hours!
Do some investigating, don’t settle! Think you can do that?

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@becsbuddy

@eileenb1022 Be very careful if you’re told that a doctor or hospital or whatever, is out-of-network. This means that insurance doesn’t cover for the visit or treatment and it can be terribly expensive!
See if there are any large medical centers or university medical centers in your area (even if it means a drive). That’s what i had to do. No one in this town knew how to handle my autoimmune disease, so we went to the university medical center. Some of my visits are virtual and some in person. Another mentor drives 2-3 hours!
Do some investigating, don’t settle! Think you can do that?

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this place is a drive. 2-3 hrs. where i live for a yr i lived in the er. i have to travel to a neighboring state to a city, boston that has better healthcare. this rheum isnt out of district for me just the sinus dr for some reason even though they are in the same city. new pcp is in boston a 3 hr drive and im hoping she will send the referral. sinus dr cannot but i had to get a marketplace insurance to be seen in boston unfortuently the agent that signed me up wasnt honest and its only a limited insurance at least until nov 1. so im responsible for half the bill but i have to do this. i also have GI issues alot of issues it seems like its been a domino effect since my gallbladder came out in jan. GI here dropped the ball on me left me with a {"supposed biopsy finding" then nothing so seing new GI in boston in nov so he can do what this other GI didnt. oh yeah alot wrong with me its just so overwhelming!

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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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