Author Topic: Newbie question: best way to firm up true dx of Sjogrens  (Read 1625 times)

Rita

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Newbie question: best way to firm up true dx of Sjogrens
« on: June 15, 2012, 02:40:01 AM »
I have been plagued by symptoms that started in the fall although I have had transient symptoms the past several years:  ear infections,  acid reflux, sore throat to burning tongue, dry lips, taut chin, blocked ear. Rapid strep test negative,  put on prilosec ( did not help ). So I was referred to an ENT. He looked down my throat said it was fine and come back to check for sjogrens with a salivary gland biopsy if I did not improve. In the mean time I had my routine eye exam and  I asked for that eye test to check dryness and she said my eyes did not produce sufficient tears which could be caused by age ( I am post menopause ) and she said she did not need to do the Schirmers ( sp ) test. I went back to my primary and listed these strange symptoms I have had over the years which are transient (  deep eye pain, blepharitis, blocked ear, taut chin,  acid reflux, soreness beneath ear and jaw,   crusty nose to dripping nose,( I have no allergies ) , vague feeling of shortness of breath& heart palpitations esp morning hours  ) mild symptoms of ibs etc. So she did blood tests ( cbc, thyroid, Sjogrens Ab, As test- all negative. Over the years I have seen  eye doctor, cardiologist, GI md, dentist, Ent, endocrinology, and nothing ever was found despite tests for my complaints.
Yet I continue to have these new symptoms of waking up with a cotton mouth,  occ burning tongue, and dry lips, along with older symptoms of taut chin, blocked ear, feeling off on many mornings.. I see the ent in a few weeks again. So my question is: is is possible to have sjogrens with a negative blood test? Should I bother to get the salivary gland biopsy? Something is wrong with me and I don't know what. it is possible I simply have acid reflux/Gerds that is causing these other symptoms?  Thanks for any advice, suggestions, experinences.

Seeker

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Re: Newbie question: best way to firm up true dx of Sjogrens
« Reply #1 on: June 15, 2012, 05:19:42 AM »
Howdy Rita and welcome to the forum.  Do not be discouraged about all those tests being negative.  Many of us here have had the same problems with the tests being negative.  Have you seen a Rheumatologist yet?  A Rheumatologist may be able to diagnose your problem. 

As for a lip biopsy, discuss that with your Rheumatologist.  Sometimes it is the only way to get the answers you need.

Another avenue you may consider is the possibility of being Gluten intolerant.  Going on Gluten free diet, has helped many of us here.  But before you do that, check with your doctor first.

Be sure and peruse the web site.  Will find a wealth of information here.  If you are feeling down.  Feel free to post your woes here.  You will always find a sympathetic ear here and we are willing to listen.

I hope you will get your answers soon.  Welcome again.

Seeker   

Every day is an adventure, waiting to happen.

eye2dry

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Re: Newbie question: best way to firm up true dx of Sjogrens
« Reply #2 on: June 15, 2012, 07:26:00 AM »
Hi Rita.

Yes....yes..yes..

Your symptoms sound  so much like myself and others on here.

My intial appt with my rheumy I had positive labs for sjogrens and was never asked for the lip biopsy. Not sure if I would of consented to that either.

As others will tell you, you can have sjogrens if your labs never ever are positive. I believe it's called sero-negative.

If you see a rheumy for this, most will treat you without positive labs. I see one benefit of not getting labs to verify a sjogrens diagnosis:

you never have to write it down as a diagnosis on health ins papers, life ins papers,etc....I would greatly prefer not to have a medical diagnosis for my sjogrens (I have RA too and do not want that diagnosis either), would just like my symtoms treated without a "label".

nice to meet you...and I am sorry you have these symptoms and I hope you get the medical help you need to start feeling better.


eye2dry

Carolina

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Re: Newbie question: best way to firm up true dx of Sjogrens
« Reply #3 on: June 15, 2012, 05:03:08 PM »
Hang on Rita,

This constellation of conditions associated with Sjogren's Syndrome is often very difficult to diagnose and treat.

Be patient and get treatments for your symptoms is my advice.

Keep us posted.

Hugs

Elaine
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