Sjogren's or not?

[Tharrell]

I hope some one can help. I have been unwell for 20 weeks now and have done blood tests, eeg with ekg, mri, seen ent, allergist, rheumatology, neurology. All tests come back ok except weakly positive for sjogren's but can't get diagnosis. It all started with impetigo. Constant symptoms are: light headed, feeling as if I'm constantly rocking on a boat inside my head, dizzy, elevator effect in head, feeling of brain shivering that then runs down my body, muscle weakness, pins and needles in fingers, ice cold hands and feet but I don't feel it, unsteady on feet. Just been diagnosed with dry eye syndrome and have dry mouth, itching ears, puffy face, heartburn that feels like something is stuck in my esophagus that's constant, bowel problems, dry vagina, discomfort and stiffness in joints, constant fatigue even after plenty of rest, brain fog. Tried vertigo meds and slow release ant inflammatories that trippled my symptoms. Doctors won't confirm diagnosis, but don't come up with answers. I never get sick and now i have been suffering for 20 weeks! Anyone have any ideas?

[keet35]

I have all the same symptoms and my Rheumatology doc diagnosed Sjogrens.  I have been taking Plaquenil since 2005 and the meds have helped overall but I still have flare ups off and on.   There is not any definitive test for Sjogrens but  positive results in  RA factor , anti- ssa and anti- ssb,and a  
+ ana that flutcuates depending on how bad the flare up is are good indicators of the disease.

The docs mostly treat the symptoms since there is no cure.

[Tharrell]

Restasis is ok, my eye doctor said to put it in the fridge and I make sure to first take the steroids and wait ten minutes before taking the restasis. I have a rheumy appointment tomorrow and I'll ask him to test the vitamin D. Next week I have a recheck blood test for TSH. I wonder what other blood test Ii can do? I also wonder what other symptoms have to show up before someone makes up their mind. I just wishe the doctors would try out some more meds to see what helps. In twenty one weeks only two doctors tried one med each. To bad they only made things worse, but it was worth the try. I was on prednesone for bronchitis, but that didn't help the rest either.

[karajo]

So the only thing that was "out" was the ss-b.  Is that correct?  
Dr Wallace in the Lupus Book says the anti-La ssb is almost always seen with anti-Ro ssa.  Rarely present by itself.  Your ssa was in the normal range.  

Just realize that just because you test neg doesn't totally rule out an autoimmune disease.  It may be that things will get revealed as whatever is going on presents itself more clearly.  

How are you doing w/ Restasis?  I couldn't use it, it made my eyes burn like a chemical was poured in them.  

Some things that you might want to try is magnesium and calcium.  Have they tested your vit D level?  

[Tharrell]

Thank you so much for replying! My test results are:
Sjogrens ab, anti-ss-a/-ss-b: ss-a <0.2 std range 0-0.9/ ss-b 1 std range 0-0.9
Sed rate 2
C reactive protein quant <1
Ana negative
C3 93
C4 28
Smith antibodies <0.2
Anti-dna(ds) ab qn 3
And a bunch more.
It's not vertigo since I am not spinning, but more like rocking. I am on restasis and steroid eye drops.

[karajo]

What test did they do to indicate possible sjogren's?  You do have several symptoms of sjogrens which are joint pain, dryness (skin, eyes, mouth, vagina) along w/ fatigue.  Dryness in the mouth/throat can cause the acid reflux symptoms.  I'm not sure if vertigo is a symtom of sjogren's but can see where it would be one.  

I do know that autoimmune diseases are difficult to diagnose because many of them progress slowly.  It has been suspicious that I too have sjogren's.  I know they have found that plaquinel helps some with the symptoms, but sjogren's is something they just treat the symptoms w/ things like eye drops (gel), and sipping on water frequently, acid reducers, etc.