Hello. I just wanted to introduce myself as I am new to this forum. I'm a 41 year old mom of 2 kids and I have been experiencing symptoms of dry eye and dry mouth for many years. In the past, I've also had very achy joints and major fatigue. I've not been officially diagnosed with SJS but the gastroenterologist that I saw to rule out GI causes of my dry mouth said that I likely had it after my endoscopy came back normal. He referred me to a rheumatologist, but I have not yet gone. I am so tired of doctor's visits. Plus, I don't really want to have a lip biopsy. My eye doctor also said I likely have it. I've had to take the cyclosporine eye drops in the past due to corneal ulcerations. Those are gone now, and the dryness mainly only bothers me at night, so I just put up with it. I look forward to learning more from all of you. It has been my experience that forums like these are extremely helpful, both for support and for medical information. I also am a carrier of the hereditary hemochromatosis gene (C282Y) and have learned alot from an iron disorders forum that I am on. Thanks for reading!
Steph
Welcome! We're a warm close bunch who know just what you're going through.
Lots of us here didn't have a biopsy in order to be diagnosed (like me). Some that did need it, flat out refused the biopsy because of the complications that often happen. There are lots of other tests like eye tests and salivary scans that can be enough for a diagnosis. Some find a good rheumy the first time around, others have had to go through a few in order to get a good one. So if you aren't comfortable with the one you first go to, find another.
Hope you find this place as comforting as I do. I know without their love and support, I wouldn't have the info or the strength to keep going every day :)
Welcome Stesha,
No lip bx here. My dr said was not needed even with mild/not bad blood work results. My symptoms were enough to put me far over the top. I would not have a bx either after what I have learned. You will get tons of great information here, you will be a member of the family soon. The search button is great if you need specific information. Many wonderful people here, you can ask questions, vent or just keep reading! Good luck!
Gayle
Hi Stesha :)
Welcome to Sjogren's world. :)
You may not need a lip biopsy as it's possible to get dxd on bloodwork. On the other hand - quite a few people in here have a dx without the bloodwork.
I hope you find the site useful. You will certainly get support here.
Take care - Scottie :)
Hi Stesha.
Glad you found us here....we always have room for more. I am sorry though that your symptoms point to sjogrens.
As you have read so far, there are rheumatologists that will treat your sjogrens without positive labs and biopsies. I hope you find one that does not require it.
My own labs that I first got in sept 2010 for AI diseases were positive from the get go. I do belive my rheumy would of treated me anyways without them.
I do not particulary care for my rheumy....mainly his personality (and staff) but he has helped me and I try to overlook the rest. I hope you and your rheumy click b/c it will make the whole SJS easier to handle.
So....once again...WELCOME...come on here whenever you need to talk or whenever you just want to cruise around here (lurking as some call it).
Not everything is doom and gloom ...we actually have a social/chat side to us that is funny, light hearted. Hope to see you around. take care.
eye2dry
Welcome to the forum.
My rheumy thinks is early sjogrens as my dry symptoms are there but not bad yet. I have flares of horrible joint pain but the only medicine they give me is mobic. I have nerve symptoms that come and go. I have an app August 2 to start my saliva testing and more that day they will schedule my biopsy, my rheumy does not this but IM NOT GOING. I have faith that when symptoms get bad enough I will get diagnosed. I dont need a diagnosis yet, when I need one and Im ready I will get the biopsy done I have faith that is not anytime soon.
Welcome Stesha,
I didn't have a lip biopsy. My symptoms and blood work gave enough evidence for the diagnosis. I hope you end up with a reasonable rheumatologist and don't have to have the biopsy since you don't want it.
Best of luck
Cdbhappy
Hey Steph, welcome to our little family! I am about your age and have two kids under five. I was just recently diagnosed after having this for at least 15 years or more. I had minor symptoms for a long time then I went completely and miserably bone dry in my eyes and mouth. I lost my voice even because I was so dry.
Now, several months later, the inflammation is down and several meds are giving me relief. I do not have any positive bloodwork to suggest anything is wrong with me, but thankfully I have a rheumy who is treating me anyway. No lip biopsy yet either.
Nice to meet you!
Welcome Steph. Sorry you had to come looking for us. I was diagnosed through my blood work. Never had to have the lip biopsy. I hope you don't either. There are a lot of helpful, knowledgeable people here and they can answers a lot of your questions.
Thank you, everyone, for your warm welcome! It is very reassuring to me to hear that many of you did not need the lip biopsy to confirm your diagnosis. This gives me strength for the future when I will just have to say 'no!' to that. I look forward to learning more from all of you in the future.
Steph
Welcome from me too Steph! And I sure hope that you find the board as warm and welcoming as I have all of these years!
Patze