newbs.

[bigb00]

Hello all! what a wonderful site you have here! soooo helpful!

23 year old female. Diagnosed with sjogren's 3 days ago. Done some research pre official diagnosis ( due to possibility ) via internet and some medical books i have access to, which either minimalized the syndrome or made it sound like a horrible cancer.
Reading this site, with ALL these people in the same boat as me has made me realize the happy medium sjogren's is in.
Have a Grandmother who has SLE for 30+ years. Which is under control.

My story timeline is as follows:
~oct 2004 -present. All over rash . Saw 3 dermatologists. All diagnoses with "generalized dermatitis" due to very dry skin.
~july 2007 - increasing fatigue.
~summer 2008 - Extreme fatigue. Affected lifestyle.
~early winter 2008 - continued extreme fatigue. joint / muscle aches and pains. Flu-like symptoms. Water intake increasing.
~mid winter 2008 - Constant eye irritations. Sand like feeling. Eyelashes also falling out. Joint and muscles now painful.
~spring 2009 - Finally told GP my increased symptoms . He was most certain I had a thyroid problem ordered tons of tests.
~Was called back a few weeks later with "abnormal results" But it wasn't my thyroid but that my ANA was positive 1:640
~Sent me for more tests this time -ENA  positive SS-A/ro-60 And ANA 1:1280
~Referred to rheumy who originally told me i was "overweight and lazy" but then looked at lab results and changed her tone.Was taking about 3200mg of ibuprofen ( bad!! ). Prescribed Arthotec, which was not tolerated by stomach. Rheumy also ordered Lip Biopsy.
~Saw GP and changed arthrotec to tramacet. which also was not tolerated due to extreme drowsiness.
~Saw Rheumy again one day before my 23rd birthday. Was told my lip biopsy came back positive.
~Started on Plaquinel 200mg twice a day. And ibuprofen prn. Will see again in 6 months and get referral to opthamologist & regular blood tests arranged.

And now... A name to all my symptoms!

[Scottietottie]

Hi Bigb00 

Welcome to Sjogren's world. Hopefully the Plaquenil will help you although it can take a while to kick in. (Up to months) I'm glad you actually have a diagnoses - it takes some people years to get one.

SjS is a very individual disease and we all seem to present in slightly different ways. I'm uncomfortable - but not ill. There is definitely life after dx!!

Hope you find the site useful. It's a supportive and friendly place to be.

Take care - Scottie 

[lynnmarie219]

Hi Bigb00!

Welcome to Sjogrens World! You really are a newbie at this....3 days into the diagnosis!

I'm glad that you found us and that you have already found the site to be helpful and supportive....its a great place to find information and friends and its a very safe place too as you don't get judged here and people really understand what you are talking about because we have all been there in one form or another!

Welcome to the family....and ask any questions or jump right on in whenever you feel comfortable!

   

[Pisces24]

Welcome to the bunch!  I am a fairly Newbie also - was diagnosed March 2009 but I am in my 50s. It took me about 6 years to get diagnosed.
2003: gp is not happy with my bloodwork and it has gotten abnormal enough to send me to a specialistv -I go to a onocologist for 6 mos, tons of tests, tells me I don't need to come back. I think I am "cured".  2004: Physical - blood #s still off - I get sent to another specialist - same senario as above, lymph node biopsy - negative.    2005: Physical - still off I get sent to an internal med specialist at a teaching hospital. Puts me on an antibiotic for 6mos = no change.  Labels me with "indolent lymphoma".  2006 or 2007 - needle aspirations done and monitored.  2008 - Internal med specialist turns me over to an immunologist. Spot on one lung so Pulmonologist monitors me too. 2009 I see immunologist - runs SJS tests and I test real high for it.  Rheumy officially diagnoses me with Sjogrens A & B. Now seeing Immunologist, Rheumotologist and Pulmonologist.

In the past I heard from the drs everything from: "probably something you got from your cat - I didn't have a cat when it started" toooo "we are pretty sure it is some type of cancer but durn you are not showing the bad symptoms and are not sick enough".    The immunologist only thought to test me for SJS because I have bad teeth cavity problems and have had partroid gland swelling in the past. Other than that and easily gotten sinus/throat infections, lymph node swelling and some fatigue at times (and odd bloodwork) - those are all my symptoms so far.

Sounds like you didn't have to go thru the "duh" doctors route like most of us did.  We don't fit the textbook definitions so we tend to get shuttled around.  Wow~  lazy and overweight - what a nice bedside manner!   Maybe all us SJS folks should make a list of all the dumb things the drs have told us.
Glad you seem to finally be ion the right track. I hope the meds are helping!