My ophthamologist just diagnosed me with cornea erosion. Does this go with Sjogren's? I also have a high ANA, sore wrist joints, and dry mouth. No one seems to suggest I have SS, but from everything I read it sounds like the most likely. I did not show antibodies for SS, but rheumy did say they or lupus antibodies may show later. It is making me nuts. The eye dr gave me antibiotics and gel drops and for the first time, I did not wake up with eye pain. I seem to be the only one who thinks I have SS. If I do have it, no one seems to care very much.
Hi Annabelle,
I am sorry about your eyes. It took me 18 years and 12 different doctors to finally get a definate diagnosis. I just had to keep pushing until I found the one Doc who seemed to take me seriously.
Maybe try a new rhuematologist, if you can.
Annabelle,
From my experience and that of the members here, the "runaround" you describe is not the exception, it seems to be the rule. I can't tell you how many specialists I have seen. I describe all the symptoms, they get my hopes up, they run blood work and say - you're fine. Right, I was fine the many times my mouth, tongue and throat dried out and swelled up, and had to get IV steroids in the ER. Fine, with high ANA, RA and clotting factors all too high.
I have learned that doctors are not all as educated as we think, or perhaps they forgot half of what they learned in med school? I think some really just don't care. Others can't diagnose anyone who doesn't present as a textbook case of something. Most of us here have varied symptoms, severity, etc. Many have co-existing conditions too. I have Fibro, IBS, Anxiety, etc on top of Sjogrens.
Don't give up. Search for a good doc - on the net, through your insurance co, from friends, anywhere you can get info or references.
We all care about you. Hang in there, and keep us posted!! :D
KellyG
Thanks, Jelly & Kelly for your kind words of encouragement. It helps to know that I am alone in this. Sometimes I fear it is all in my head, but then my wrists jolt me back into reality with their pain.
Sometimes eye issues go with rheumatoid arthritis, too. Were you checked for that?
I went to one rheumy who did a lot of bloodwork, but she said the only thing that came back abnormal was a high ANA. i'm only guessing that she test for RA also. I am going to go get a copy of the two labs she did, just to see what was tested for. She didn't really seem to care if she helped me or not. I don't think I've ever had such a cold, unresponsive doctor before. I almost felt like she wasnt paying attention or else didn't believe me that I was having that much pain. I am getting connected to a rheumy in NYC who is supposed to be one of the best. Wish me luck!
Annabelle, I have not read all the post though have noticed this keeps being of interest on the board.
I spent 17 years with Dry Eye Syndrome and was mistreated by using non preservative eye drops and others stuff. In 1995 went to John Hopkins and was diagnosed with Sjogrens.
Waited until 2000 when USA'S Food and Drug Adm approved the peeling of top layer on outside of eyeball which is called epithelium. I had both of my peeled by a very skillful corneal surgeon at Duke Eye Ctr. in Durham, NC. At the time of surgery I was low vision impaired and on disability.
When the patch was removed from surgery on first eye and hubby was helping me walk to car, I exclaimed I had forgotten how beautiful the bark was on the Southern Lolly Pine Trees.
Hubby said she knew in his heart a miracle had just been accomplished. Second was was done and I was seeing 20/20.
It's been my eyes as my biggest issue and guess I have let it be as I cannot imagine living in a world of blindness.
My daughter has spent the last 7 yrs with a diagnosis of chronic dry eye syndrome and she lives in Atlanta and just last year she was diagnosed with Sjogrens.
During her visit this Christmas she asked several questions as how I was handling my eye issues as she always has said apples don't fall far from the tree.
Questions, PM me and hopefully I can clarify what I have said. Off to eat....