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Author Topic: New to this Website  (Read 460 times)
tribemom
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« on: November 07, 2009, 05:08:15 PM »
Hello!
I am new to this website, as a member, even though I've been reading posts for several months. My rheumatologist is almost certain I have Sjogren's, even with normal ANAs and other lab tests. The first ANA came back positive in October 2006, when the excruciating joint pain and fatigue had been around for several months. He says the Plaquenil could keep my lab work normal OR it's possible to have Sjogren's with normal labs.

Since then, I've been thru the mill with IBS, degenerative disc disease in low back, total abdominal hysterectomy, dry eyes nose & mouth ( with absolutely no tear film in eyes), HTN, high triglycerides, insomnia (2 yrs now),GERD, & connective tissue disease. I think that about covers it.

I cannot tolerate heat or cold, and have Meniere's Disease symptoms as well. I"m so frustrated! But, reading the posts here have helped me to find other people with the same problems as I deal with. It's been a great "support" system. I just hope that I can get an actual diagnosis SOON! Thanks for posting on this site.
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TribeMom
Scottietottie
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« Reply #1 on: November 07, 2009, 05:22:05 PM »
Hi Tribemom  Smiley

Welcome to Sjogren's world. I'm sure you will have already read in here that it is possible to be seronegative and still have Sjogren's. The main thing is - to get the symptoms treated. Were you put on Plaquenil because of the symptoms you are suffering? It sounds like you have a good rheumatologist.

I hope you continue to find the site helpful.

Take care - Scottie  Smiley
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JannaLee
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This is me.
« Reply #2 on: November 07, 2009, 05:41:05 PM »
Hello Tribemom!

I'm delighted to make your acquaintance!

Janna
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Primary Sjs with Lupus overlap, Reynauds
Plaquenil, Diclofenac
48 yr old female (can't believe I'm that old!)
lynnmarie219
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« Reply #3 on: November 07, 2009, 07:05:05 PM »
Hi Tribemom and welcome to Sjogrens World!

It sure does sound like you have a good rheumy...to say that you can still have sjogrens with negative labs! Many docs wont even look at or treat people if they don't have positive results...so hold on to that doctor!

Come here often and read all that you can or want to...and if you have any questions...feel free to post them here and someone will always come along to offer some information.
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Bucky
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« Reply #4 on: November 08, 2009, 04:37:07 PM »
WELCOME TO YOUR NEW SJOGGIE FAMILY TRIBEMOM    Grin
Bucky
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Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  Grin
kimbo
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« Reply #5 on: November 10, 2009, 08:18:45 PM »
Welcome tribemom,

Glad for you!  That you have a Dr ready to treat you and understands your symptoms.

Please make your self at home and enjoy the sjoggie family of great compassion and encouragements here.

Blessings kimbo
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Patze
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« Reply #6 on: November 11, 2009, 05:36:04 AM »
Hi Tribemom,

Let me also welcome you to the SJS World!  Please do look around the board, and if you have any questions, do feel free to ask.

I'm sorry that you've been through the ringer, but I sure hope things start looking better for you soon!

And let me also welcome you to the sero negative crowd here!  I've never had a positive test (other than an elevated ESR), and I have the room wallpapered to prove it too!  Wink Cheesy

Hang in there and I hope that you feel better soon.

Take care -

Patze
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Sero Negative Queen
~elizabeth~
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« Reply #7 on: November 11, 2009, 08:48:20 AM »
Hi, welcome. I'm fairly new to this too, but one thing my rheumatologist did say was that you can have SjS without ANAs being abnormal, even without taking any medicines that may suppress it. I suppose the thing is to find doctors that understand the variability of the condition, and take account of symptoms rather than getting hung up on results.
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Diagnoses: autoimmune thyroiditis, mild Raynaud's, Primary Sjogren's pending tests/biopsy, conductive hearing loss
Meds: thyroxine, triiodothyronine, pilocarpine, various anti-fungals, hoping to start placquenil
EllenS
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« Reply #8 on: November 12, 2009, 07:33:44 AM »
Hi TribeMom -

I'm new here too - it's good to connect with another newbie.  Smiley 

Nobody ever told me you could have Sjogren's with neg. bloodwork.  My symptoms began in my late teens (I'm 45 now), yet it was only in the last couple of years that my antibodies showed up in bloodwork.  My ANA has always been high. 

This is all news to me!   I wish I would have known about Sjogren's way back then.  I'm glad you have such a good Dr and you found this site.  It looks like there is much to learn here!

~Ellen
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tribemom
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Posts: 18
« Reply #9 on: November 12, 2009, 06:42:34 PM »
Thanks to everyone for your encouragement and support. I am 40 and I've been struggling with this for over 3 years. It sounds like some of you have it worse than me and I'm sorry about that! I know at some point we're all miserable. Dry this, dry that, fatigue, pain here, pain there.......................you guys get the drill.

I hope that my input may be valuable to you or another. My DH, and biggest supporter, keeps telling me to rest. He has to remind me I need to slow down.

TTYL
Tribemom
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TribeMom
CathyO
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Posts: 16
« Reply #10 on: November 21, 2009, 09:20:09 PM »
Hi there, I'm Cathy, just got diagnosed this week,
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Opthamologist DX Sjogren's, Secondary. Graves Disease DX since 2004. GP working on a referral to UCSF, as local Napa rheumy does not treat SJ.
Ohiocat
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Posts: 130
« Reply #11 on: November 21, 2009, 10:51:48 PM »
Welcome Cathy.   I am glad you found us.
People here can answer many questions. 
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female 51, no thyroid - levthyroxin 125mcg; Primary Sjogrens:  Dry mouth; Dry eyes-thera tears every 2 hours, Refresh PM at night, Restasis twice daily;
Katybarstool
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« Reply #12 on: November 22, 2009, 06:15:29 AM »
Hi Cathy

Welcome from me too. I hope you find our Sjoggie family as helpful as I have.

Kathyx
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Scottietottie
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« Reply #13 on: November 22, 2009, 07:06:05 AM »
Hi Cathy  Smiley

Welcome from me too.

Take care - Scottie  Smiley
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lynnmarie219
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Some Days Look Better Upside-Down !
« Reply #14 on: November 22, 2009, 09:26:56 AM »
Hi Cathy and welcome to Sjogrens World!

Can you tell us a little more about yourself and your journey to a diagnosis?
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