questions about (1) bloodwork and (2) specialists

[LilliaT]

I have a couple of questions, and (once again) I'm hoping to get some advice from people with more experience.

1.  Blood tests: I know there have been so many posts about negative and positive blood tests, and so I'm sorry if this is repetitive.  But I'm just confused about my status right now.  (I'm still in the process of trying to get some kind of diagnosis.)  Is there any significance to ANA going from positive to negative or vice versa?  Also, is it true that once you have a positive ANA, you're always considered positive?  I have seen and heard conflicting things. 

My blood work has been as follows:

• Last October:  routine bloodwork showed a slightly positive ANA (1:80).
• This May, after I began worrying about the worsening dry eyes/mouth, more extensive blood work was done.  All autoimmune markers were negative:  ANA, SSA, SSB, Anti-neutrophilic Cytoplasmic Antibodies, Sedimentation Rate, Rheumatoid Factor, High Sensitivity CRP, etc.)  Based on these results, the rheumatologist thought an autoimmune issue was very unlikely.
• Just recently, I saw a new doctor after my primary care doctor moved offices.  New blood tests were done, and my ANA is positive again (1:80).  The other autoimmune markers were normal, although she noted that the lab failed to test Sed Rate as requested.

2.  Doctors:  In your own experience with Sjogren's, what type of doctor have you found most helpful and knowledgeable -- either in diagnosing you or in treating you? 

I had this idea that there were doctors who are true experts in Sjogren's -- who keep up with the research, understand the different types of symptoms that can be associated with Sjogren's, and can just act as a guide for getting diagnosis and treatment.  But it seems like that was an unrealistic hope.  Even the rheumatologist I saw (who has some experience with Sjogren's patients) seemed to think that I couldn't have Sjogren's unless I checked off certain very specific boxes.  For example, although I told her that my mouth was very dry (particularly inside my lips, which are always sticking uncomfortably to my teeth), she just took a quick look at my tongue and said that it didn't look "cracked" enough to be Sjogren's. 

I know it depends on the individual doctor, but I am curious as to what kinds of doctors (rheumatologist?  GP?  someone else?) have you found to be most helpful and knowledgeable in guiding you through this whole process? 

Finally, if by some chance anyone has any recommendations for any doctors with Sjogren's experience (of any type, including dentists) in the NYC area, I would be so grateful if you could send them to me.

[SjoGirl]

It is possible to have Sjogrens and be what is known as sero-negative. Some docs will diagnose you based on symptoms, others will not.

Here are docs who have proven helpful to me:

1. PCP who doggedly kept sending me to docs until we found answers
2. Neurologist - mine is wicked smart, not just about neurology, but medicine in general. He's the one who figured out that I probably had some form of autoimmune disease.
3. Rheumatologist - One not bound by the boxes, which can be hard to find. I have found docs at academic medical centers to be a bit more open minded and well educated.
4. Ophthalmologist -- Critical to have a Schrimer's test done and have a doc who knows that dry eye can be the result of more than lack of tear production (one can also have a decrease in tear film).
5. Allergist  -- some SJS type symptoms maybe due to food or other allergies.

Add to this list if you have access and wish to do so a good counselor or psychologist who preferably has expertise in dealing with people with chronic conditions (that specialty may be hard to find, if you can't locate one a good professional can help keep you sane in the early going).

Hope this helps.

[JoanElizabeth]

As far as ANA I have heard most doctors look for positive results on 2 different occasions. However some may not consider 1:80 positive (although it ranges from doctor to doctor). Either way many SS patients have no positive blood tests.

As far as doctors, have you looked into HSS in NYC? They have a top rheumatology department and I would imagine someone there specializes in SS. The other specialist you see have to do with how the disease affects you. I currently see a PCP, rheumatology, cardiology, GI(2 actually, one who does my Celiac stuff and one for motility issues), ophthalmology, and an adolescent med specialist (helps coordinate all my doctors since many are still peds and some are adult ones)