Finding a Sjogren's dr in NJ or NC

[barc]

My symptoms started 3yrs ago with burning mouth, swollen tongue & lips which ended up peeling. It eventually went away but a year later it came back twice but with mouth ulcers. I've had dry eyes for a long time, don't know when this started but it often feels like I've got something in my eye. I finally did some research on my own and mentioned it to my dds who said it could be sjs. I went to a Rheum who did blood work..all came back negative but the eye dr she sent me to confirmed dry eye.  The mouth problems seem to be the worst but I'm having an awful time finding an oral surgeon or someone that can help me get this dxd. By the time I get the appt, the problems disappear. I've asked both oral surgeons that I've seen how much they know about sjs and both said not much. How the heck do you find a qualified doctor? Does anyone know of a doctor or center in NJ or NC? This is so frustrating.  I also have other autoimmune problems - MS about 20 yrs & Raynauds.
Thanks-barcy

[Joy Cox]

Try Duke University Medical Ctr. in Durham, NC. Have been patient there for over 10 years and one of top 10 in nation in rheum.

[barc]

   Thank you so much Joy for responding. I have a 2nd home in Clayton that we're most likely moving to come early next year.  Is there a particular doctor that treats for SjS? We're there every month, so maybe I could set up an appt with him. Not that we don't have big hospitals here in NJ, but the best advice I'm being told is to go to Phila. Somehow I think I'll be more comfortable going to NC. Thank you so much.  I'm very frustrated right now, not dxd, severe flare I had 2 wks ago with mouth problems started back this am. Did you say you've been treated for sjs for 10 yrs? Do you have a suggestions for mouth ulcers and cracking lips?   barcy

[Linda196]

Hello Barcy, welcome to Sjogren's World.

I do hope you find a doctor with whom you can feel comfortable and confidant, and get a DX quickly. If you do a site search (box at top left of the page) you will find lots of posts regarding mouth care, but what it usually amounts to is finding the preparation that works best for you. Lots of people find increasing intake of Vitamin B is beneficial, and since it's a water soluble vitamin, it can't build up in your system.

[barc]

Thanks for the info Linda. I rinse my mouth with Biotene and a new trick my regular dentist told me about.
I mix equal parts Maalox and a liquid allergy med togther, then swish that around. He said it would help with
the burning mouth and ulcers I get. It does seem to help a bit so I guess I'll keep it up for awhile. Thanks again.
barcy

[sleepy]

Hey Barc,

Keep looking until you find the right doctor, it took me 10 years to be diagnosed. I went to my current doc one time, he sent me for blood work, they took 5 tubes. I went back a week later and he told me I had Sjogren's. Never heard of it, he gave me some websites and I was in shock, it was like reading about my daily life! He took the time to listen to my symptoms and ran all the right tests. He is not a warm fuzzy type but I really don't care about that, he listened. 

"Keep telling your story until someone listens", that should be the Sjogren's motto! LOL.

My goal now is to get this doctor to smile   

[Scottietottie]

Hello Barcy 

Welcome to Sjogren's world.  You are not alone in having negative bloodwork.  Good luck in your quest for a doctor. I know it would be difficult but is there any way you could get pictures of your mouth when it's bothering you?  I've used photos a few times with docs after the symptoms have resolved before I've actually seen them.

Take care - Scottie 

[lynnmarie219]

Hi Barcy!


Just want to welcome you to Sjogrens World!

I hope you find something to help relieve you symptoms....and yes...Biotene is a good one to use for dry mouth! I have to admit though..I have never heard of the Maaolox and allergy med mouth rinse...but hey...if it helps...go for it!