Hi all.....I guess you can call me a Newbie as I'm trying to figure out if I truly do have sjogrens syndrome. After 2 1/2 hrs at Urgent Care yesterday maybe I do. I have been trying to read a few posts to see if I find anything similar and I have soooo....maybe I do. I'll have to look up my labs when I was first tested but did see where some ppl are dx by symptoms and some dx by labs. What took me to Urgent care was a sore mouth, I thought might be thrush/yeast but it didn't look like the typical thrush. It is just on the back of both sides on my mucous membranes of my cheeks Burns with some foods/drinks but then my teeth hurt more (recent dental work included 2 extractions and 1 crown reapplied.) My husband felt yesterday my mouth looked worse so I went to urgent care. I was dx with "lichen planus" and my mouth looked just like that. Mine is like a creamy looking wiggly line. There were some other pics that were definitely not me but this one the doc showed me was pretty close. He said it could be treated with some cortisone cream (I shouldn't take cortisone) but he felt maybe my doc should assess it first. I have an appt with my oral surgeon friday (this is sunday) about a bone sticking out of my gum from where he pulled a tooth. Its like a white bony point sticking out lol. I swear. Nothing can be easy.
So, do any of you have lichen planus? dry mouth w/o dry eyes? any other symptoms. I have such an extensive history I don't know what to play for what anymore. Which of your docs dx the sjogren's? My arthritis doc dx me. My family docs have never said anything about it. Andy until my mouth got sore all I complained about was a terribly dry mouth and my teeth starting to fall apart. My doc said that my arthritis and sjogrens can cause that. Anyways, it might help if I put my history up to tell you more about me.
Thanks for listening and any response will be appreciated......Linda
Linda, welcome to the forum. Dry mouth and teeth rotting out, I can relate to. Your Rheumy would be the first to Dx you. You may see a Neurologist, and an Optomologist to confirm your Dx.
I had dry eyes for years before my Dx. I just thought it was eye strain from working with a computer so much. The mouth issues came later and progressed over time as i ignored them. Then, wham, a SJS flair gripped me and I knew that some thing was wrong.
Take care of yourself and be kind to your self. It may require surgery (stitches) to take care of the protruding bone. Ask about "dry socket" issues.
Hi Joe...thank you for your reply. With my eyes I have sand left in my eyes lids from the sandman every day. Thats about all the eye dryness I can think of. My tear function is fine as anyone who knows me would tell you I cry at everything lol. Just sentimental is all. Have you had the dental problem? I am on arimidex hormone replacement following my cancer and I thought maybe it could be from that but my rheumy didn't think so. He said more probably the arthritis and sjs. Do you have the lichen planus? Was wondering if this stays or comes and goes? I used biotene mouthwash when I was getting chemo and that helped the sores in my mouth. When you talk about your flare up....what does that normally include? How does a neurologist fit into sjs? Or maybe I misunderstood that. Thanks so much!!
Linda
;D
hi Linda :)
Welcome to Sjogren's world. I'm sorry - I don't know anything about lichen planus. I do know that sjogren's is an incredibly individual disease and that people can present with different symptoms in no particular order. It's described as slowly progressive. For some - it hardly seems to progress at all, where as for some - it seems to gallop! Everybody doesn't get all the same symptoms either.
Hopefully someone will have a better answer for you soon.
I hope you find the site useful.
Take care - Scottie :)
A Flair is when your symptoms go into over drive and it often includes pain. Since Sjogrens affects your glands and drys them out, you may also get neuropathy or other nerve issues. That is why I go to a neurologist.
Well dang it I just had a msg to you Joe and Scottie and pushed some button and it disappeared lol. I hate when that
happens.
Anyways will say it short and add to it laters :) Thanks for your replies. I was wondering Joe how u get your dx under
your name by pic and your meds in the signature part.
Am I allow what part of the country ppl are from? If not its ok, i'll wait to find out when I come back
Good nite you two nice chatting with you. Do you guys ever go to the chat sessions?
Take care and hope you have a super day tomorrow. Thanks for the warm welcome!!!
Linda
Linda, You will find the blank for information under your name on the same page you put information into your signature. I believe it is part of your profile.
i do not chat because I have a problem getting my ideas out through my fingers. (My attention is very short). I prefer Voice or Face to face communication.
I live in MN as you may guess from my other posts.
Hi Linda :)
I'm in England in the UK. It really is a site for people all over the world.
Scottie :)
I was diagnosed after 6 years by an immunologist at a teaching hospital. On blood tests, my ANA was very high (shows my body fighting something) and my SS-A and SS-B were also very high so they were able to diagnose me with just blood tests.
I was able to put up with my symptoms prior to my diagnosis. The most trouble was cavities in my teeth. Up until 10 yrs ago I had maybe 5 cavities my Entire Life! Now I get 5 a year and I take a heck of a lot better care of my teeth too to no avail. Dentures are down the road and nothing I can do about it. I also can't wear contacts due to dry eyes.
I recommend a teaching hospital as they actually like puzzles and you have a whole bunch of different specialist under one roof so they can consult.
I tell everyone here my most favorite pre-SJS diagnosis was "The Cat Did It". ROFL :D I actually had a dr tell me it was probably something I got from my cat and I didn't have a cat when the whole "mess" started. Oh they things they come up with when they don't know. ;) ::)