Author Topic: Diagnosing Sjogren's Syndrome: My Introduction  (Read 5037 times)

tabletop

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Re: Is sjogrens terminal if not Dx early
« Reply #15 on: November 09, 2012, 06:51:02 AM »
I don't want to ask but I will anyway because I think everyone on here wants to know re: Kamie I thought Sjogrens is not terminal. Just because of a late Dx what difference does that make? Anyone out there know what has gone on here? Tabletop
« Last Edit: November 09, 2012, 07:34:06 AM by tabletop »

Tivia

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Re: Is sjogrens terminal if not Dx early
« Reply #16 on: November 09, 2012, 09:51:42 AM »
I don't want to ask but I will anyway because I think everyone on here wants to know re: Kamie I thought Sjogrens is not terminal. Just because of a late Dx what difference does that make? Anyone out there know what has gone on here? Tabletop

This may be a touchy thing to talk about right now, we are new here and those that have been here for a long time are feeling grief at the moment. I too am crying over the senselessness of the dying of this woman I dont know, but has implications for all of us. We are told its nothing major, dont worry, its annoying  >:( The truth is it can progress to severe disability and even death. I dont want to be down the last few weeks havent been bad for me. But coming back and reading about Kamie and Sass has sobered me up. We had all better be more vocal and proactive about this illness. We need to be a voice heard in the medical world, that this is serious our lives are at stake here.

Meld256

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Re: Diagnosing Sjogren's Syndrome: My Introduction
« Reply #17 on: November 13, 2012, 10:01:01 PM »
Hi tabletop,

Welcome to our forum. ;)
Please forgive my late response, but I want to let you know you've come to the right place to find great information, encouragement and support.

I can completely relate (as many others here can) to some frustration about how to find out exactly what's happening and how to manage symptoms you're experiencing. 
As said, it's so important to find a rheumatologist or any doctor you feel comfortable with and who will really listen to your concerns and work with you.  It's sounds as if yours is being helpful trying the predisone for now.  I hope that you'll find out more soon from the biopsy and from talking with them.

Many of us have Sjogren's along with some parts of other autoimmune things going on; some symptoms overlap and it can all be very difficult to pinpoint exactly what a diagnosis is sometimes.

I hope that you'll find your time here informative, hopeful and helpful. We all really do understand what you may be going through and wish you well, and that treatment will be helping you feel better soon.
Please keep us posted, know that we care and we look forward to hearing more from you.  ;)

Melinda

MaryBee7

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Re: Diagnosing Sjogren's Syndrome: My Introduction
« Reply #18 on: November 14, 2012, 02:55:12 AM »
It's beyond "comfort" to know you are all here.  Your stories are mine, too!  Tabletop, my job requires a lot of talking and sometimes teach classes for kids...I run out of words (cognition problems) and voice due to hoarseness and dryness...I just have to stop talking.  Even if I sip water and have some type of lozenge in my mouth, I have to stop talking.  F.A.T.I.G.U.E     omg, people have no idea what it is...... they say "oh, you mean you get tired easily"........  :-\    Well, you all know.  Question:  does ANYone have this .... "headache" type feeling behind the eyes?  I can't put it into words...it gets overwhelming and doesn't matter if I'm at work or home...it isn't pain, it's a really strong feeling of fatigue (?) behind my eyes.  Have had only one eye exam since diagnosis in May of this year and it was not earth shattering, optometrist said he saw quite a bit of dryness and I have nearly constant blepharitis...though the baby shampoo wash a couple of times a day does help.  It is amazing to see the "doctor shopping" we have all experienced...I feel like a ping pong ball but finally have positive dx for Primary SS.  Am glad at least to know.  Thanks all!

grammad97

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Re: Diagnosing Sjogren's Syndrome: My Introduction
« Reply #19 on: November 22, 2012, 07:54:17 AM »
Hello and welcome to a group who can understand your frustration and fear better than anyone because they have been there too. Definitely a rheumatologist inboard for your diagnosis and treatment. After years of tests and many possible diagnosis a new rheumatologist said based on your symptoms and some labs I believe you do have an autoimmune and put me on a short course of prednisone.  He said if you feel better then I am comfortable with putting on paper a working diagnosis of lupus and mixed connective tissue disorder.  Prednisone made me feel like a million bucks! So he then started me on plaquenil and when he left area and new rheumy got me he was a researcher and defined me as primary sjogrens/connective tissue disorder. Best of luck to you on this journey.  Take care of you first and pace yourself daily base on how you feel that day and avoid stress. My best advice is to focus on the positives and stay focused on all you can do not what you cannot.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss