View Full Version : Flick having a rough time
So I just found out that I may have Sjogren's Syndrome. Two of my lab tests for auto-immunity came back positive.
As a 24 year old male I may have somehow I beat all the odds of getting Sjogren's, which affects 10x as many women as men, primarily in their 40's and 50's. What luck.
I'm gonna see some specialists in the next few days to find out if I have it.
Sorry to be so negative, just having a bad day.
Not good news, Flick. I'm sure you had a kick in the gutt feeling. You are having more tests soon and that IS a good idea. Not to be trite, but some of the tests can give a false positive because of something else going on.
With Sjogren's I understand that many people have it and the tests do not show it. Let us know how you made out at the doc's visit. Are you seeing a rheumatologist? If you got in so fast, you're lucky, because many have a 3 month waiting list.
Be sure and keep us posted. Good luck and it sounds like you have doctors who are on top of your situation. For them to even think to test you because you are a young male is sort of amazing.
Yeah. That IS a bad day. My heart goes out to you ... one way or the other.
I think you probably know more about this than I do, but ... I think a salivary gland biopsy of the lip is considered the definitive testing procedure. You may want to push for it.
I've posted a link before to a site for Sjogren's people. Charon8 is one, too. Here's the general link--rather than just the eye forum:
It's my understanding that where I went -- National Jewish Medical and Research Center, in Denver -- is among the best immunology centers in the country.
I don't know what to say. Maybe I'll reach for the proverbial silver lining and say that--maybe it's better to HAVE something -- something they can TREAT -- than just to have all of the symptoms and no idea why, nor any way to effectively manage them.
That's me trying to be positive.....
All the best ... really...
I am sorry you're getting some bad news, Flick. A diagnosis is a 'good' thing in one sense (esp. considering the average time to diagnosis of Sjogrens is very long - I'm thinking 10 years or something? because of awareness issues) but it's not by any means an easy thing. Hang in there.
Thanks for the kind words. Still no luck finding a rheumatologist just yet, but did get an appt. with a psychologist.
I'm so sorry that you've gotten that bad news. I hope that you are able to find a doctor soon, and are able to get definite answers about your diagnosis. I know this must be very rough on you. Please keep us posted on what you find out in the next few days. You will be in my prayers.
Saw a rheumatologist today, it was likely a false alarm. Phewwwwww. My ANA was only slightly elevated, which is relatively common. And the other indicator is vague and non-specific. I'll know for sure on Wednesday, but I should be in the clear. I'm pretty angry at my eye doctor, who should have said "it's probably nothing but a few of your labs came back slightly positive and you should get them checked out" rather than "your labs came back abnormal, you need to see a rheumatologist, you may have Sjogren's."
So the hunt to figure out why my eyes are dry continues . . .
Also, if anyone is ever worried that they may have Sjogren's, I discovered that there is a Sjogren's clinic in Bethesda, MD that will examine you for free (because it is a federal research facility) for an entire day and then help diagnose you. They do eye exams, oral exams, lip biopsy's, blood work, everything. It's called the Sjögren's Syndrome Clinic at the National Institute of Dental and Craniofacial Research.
We're all rootin' for ya, so hope the news will be good! There are many other medical conditions that can cause dry eye, and environmental factors, meds, etc. You will be in my prayers, too. This is a wonderful and supportive site.
Powered by vBulletin® Version 4.2.1 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.