Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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/ Sjogren's Syndrome Support Group

Is it really Sjogrens?

deleted_user
deleted_user
I am here because my Rheumatologist dianosed me with Sjogrens. I had a lot of Autoimmune disease symptoms, and no one would diagnose me with anything, and then I tested positive for SSA, so he said "you have Sjogrens."

I don't have dry mouth or dry eyes. I had a lip biopsy and a blocked salivary gland tested and both came back with no signs of Sjogrens.

I have overwhelming fatigue that comes and goes. Sometimes I have debilitating weakness, and rarely I have joint pain. I've been dealing with this since I was at least 23 (probably longer), and I am now 31.

I've had positive RF and the indicating ANA factor. I'm also Anemic and have been vitamin D deficient, for which I take vitamins. I also have hypothyroidism.

But is it safe for my doctor to assume because I have the SSA antibody that I have Sjogrens?

And the other thing...Now when I go to doctors for a problem (the dermatologist, for instance with some redness on my face), I feel like they just default to Sjogren's as the cause. The dermatologist just flat out said it was from my Sjogrens, and I wondered what she would have told me it was if she didn't know I had Sjogrens.

I am so sick of doctors at this point in my life, and I feel like no one really cares if I get diagnosed properly or if my symptoms are relieved. Just slap a believable diagnosis on me, bill me, and send me on my way...
deleted_user
deleted_user
Have you actually had the ANA test done on you...your symptoms sounds more like lupus or another connective tissue disorder. Could you get second opinion from another rheumatologist? I suggest that you get a second opinion.
deleted_user
deleted_user
Yes, I've had the ANA test, and it was outside the normal range. I don't remember the exact numbers, though.

I agree with you. I feel like I should be diagnosed with Lupus, but then I am at the mercy of a doctor. As far as second opinions go, I am with my 4th rheumatologist. I have had a rough time getting any sort of diagnosis.

Thanks, though. I am going to have to find a 5th rheumatologist, I suppose.

Michelle
deleted_user
deleted_user
Don't give up on searching for a definitive diagnosis. Another type of doctor that you could try to get something definitive would be an internist, and if this type of doctor gives you a definitive diagnosis of lupus, have him/her refer you to a rheumatologist that he/she trusts.
deleted_user
deleted_user
I did not have dry eyes or mouth when I was told I had SS. I was told not everyone does. In the past couple of years I have dry eyes and mouth. I had questioned whether or not I had SS also. Tests say I do.
deleted_user
deleted_user
I have SS, lupus and diabetes. I tested over the range for SS with a score of an 8 or 9. I had dry mouth really bad but always thought it was from diabetes. I went to the opthamologist and when he examined my eyes said they were dry and he gave me gel drops to take. I am new to all of this as well. From what I've been told not everyone has the same symptoms and they can be different at different times.
Sillyak
Sillyak
I know how you feel. I was misdiagnosed by many Rheumys. Ask for specific enzyme-linked immunosorbent assays (ELISAs)There arespecific antibodies foreachconnective tissue disease and Idonot know why docs don't run the blood work that points to what connectivetissue disease we have. They do not have to guess.
Ali5tair
Ali5tair
Dont know what proportion of SS sufferers are asymptomatic. Its a diffiicult one. I empathise with your feelings re Dr's. Lupus would sound more sensible Dx but like you say we are all at the mercy of the Dr's.
If I were you I'd do a completely blind history for your next opinion. Dont tell the next Rheumy anything about your previous history re Dr's concerned that way they wont get confused, prejudice,biased. Hopefully they will start from scratch again.

Al
deleted_user
deleted_user
Alot of times these two diseases accompany one another. My Rheumy diagnosed Sjogren's first before the ANA and other symptoms began to pile up. Eventually he just labeled me with Mixed Connective Tissue Disorder due to the overlapping diseases. The two have so many similar symptoms and a neg ANA does not always rule out Lupus. Usually if you have other symptoms the ANA will eventually be positive. Some of these docs are not as familiar with Lupus and all of its mysteries as others. I was blessed, when I moved and lost my regular Rheumy I eventually found a very good doctor familiar with Lupus and believe it or not, he is not even a specialist, just Family Practice. But docs in this areas just were not as familiar with these diseases.
If you are not comfortable with your doc or your diagnoses, continue to search for one that you are comfortable with.
Good luck. Take care and let me know how it goes.
Lolo
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