Sjogren's with no antimodies

[Dee13333]

In the last 6 months I have had a team of doctors and dentists trying to determine whether I have Sjogren's or not.  It was the original diagnosis based on a positive lip biopsy.  My rheumatologist, however, is not convinced.  While the biopsy was positive, and the Schirmer's test mild/moderate, he does not want to diagnose.   Along with all of this, I have developed the painful joints/tendons/muscles, etc., (the onset was within the last 8 months when this roller coaster began).  The pain and stiffness can affect how I function throughout the day (and hips/neck/shoulder joints get so painful at night that to roll over will wake me up).  Most of the time, it's all just annoying.  However, the most debilitating symptoms are the bone-crushing lack of energy that never goes away (no matter how much I sleep), and "muscle laziness."  I call it the "floppies" because on bad days I don't want to lift my arms, hold up my head, walk, or anything.  Neuro/Nerve tests were normal, muscle strength is normal, and my CPK levels were normal.  As a matter of fact, ALL my blood tests were normal with only one coming back borderline (out of the 3 I've had in the last 8 months) for the RA anti-body.  The doctor is baffled by the muscle thing (he sent me back to the neurologist, who sent me back to the rheumatologist) and I think is relying on something in a blood test to say whether I have Sjogrens.  In the meantime, I struggle to even work through the floppies and the fatigue, the mental fog can be debilitating, and the memory loss is scary.  I'm scared I'm going to have to decrease my work hours and become a lump on the couch. (I'm already down to a 32 hour work week due to other chronic illnesses)

Is it possible I have Sjogrens with no antibodies to show for it (I've read that it is, but then why is the rheumatologist so reluctant)?  Also, has anyone else experienced this muscle laziness?  Most days I feel like a 300 pound zombie walking uphill in jello.  What is going on?  

[kdlee]

I have Sjorgens SIcca, Raynauds, Ostoarthritis and Fibromyalgia X 13 years..All this came up after a bout of pneumoina..I just never got any better..The sjorgens is now severe enough by the recent labs of 4/9/09 that it has affected my kidneys and placed me in a stage 3 out of 5 for my kidneys.My labs fluctuated and docs were back and forth about actual cause..Finally I told them if it walks like a duck, talks like a duck it's gotta be a duck..So, labs finally gave everyone what was needed for proof they needed..Always Research is what I recommend you do..My eyes are so dry that I use a tube of eye ointment a week or my lids would stick to my eyebal and cause painful sores..(Which has happened beofre)..I see a Opthalmologist every 6 months and have a visual field as well to be sure vision hasn't deteoriated..My shirmers test is very positive for the Sjorgens plus I have no tear ducts..I lost all my teeth to the Sjorgens and due to bone loss am unable to have a plate that will stay in place on lower jaw..Thankfully can wear upper plates but even still am so dry the plate makes sores ..Due to the pain issue I tried to have a pain pump installed but ended up with a 24 hr. epidural headache and the trial had to end with a blood patch..Don't know if I will be able to try it again or not but something to think about..I have tried all the meds out there for this and I am so sensitive to meds that nothing has brought relief..I don't like meds but would love to find something that owuld work..Lidocaine patches help some with the topical pain and not so deep pain..
I guess what it all boild down to--DON'T GIVE UP, don't always accept what the doc says as gospel..Many times I have found the docs are over worked understaffed and working on short fuses..The docs jump for answers and it doesn't always mean they are right..A good doc will say they don't know but lets try to figure this out..

[misngal68]

I have been told I have a little Sjogrens and a little Fibromylasia yet test negative in all areas in the Sjogren's dept.  I do however hav a positive ANA of 1:160 from what I hear is a low positive.  My Rheumy did perscribe Plaqunil, Ultram and Celebrex for the unbearable joint pain.  I also hear Lyrica works well for some with the the joint/muscle pain.  Basicly the Rheumy said we are just waiting to see what disease my body deciedes to come up with that will test positive.  We are just treating the symptoms because even if it did test positive that's all they would do anyway.  I've recently been diagnosed with Erosive Esophagitis, Gastritis, and Gastric Polyps, hopefully not because of the meds I"m taking for the joint pain but I'm seeing a Gasto soon to discuss that.  Hope you find some answers soon, I had to go to 2 Dr. to find one that would even give me a Rx for the pain so don't be afraid to ask for another oponion.  God bless

[Dee13333]

My Rhemy finally gave in and said I probably have Sjogren's and started me on a therapy of Plaquenil to see if it would help my joints.  He's still puzzled by the muscle thing, and I don't think he comprehends (or thinks I'm exaggerating).  I have begun the think that I may have something additional (and he does too, but don't know what), but right now it's just Sjogren's with no antibodies.  I was blessed with a good month until recently when I started experiencing the more worse symptoms including the memory, more sore joints and the floppies.  My challenge now is the see if the medicine provides any relief (hard to say yet if it has since I began it a month ago when I was in a "remission."  My dry eyes/mouth are not too bad most of the time, although I have had mouth attacks in the past that involved swelling of the glands under the tongue.  Still, I attacked those two problems pretty aggressively, so I'm careful.  No crackers, no french fries (unless DRENCHED in ketchup), gummi bears sparingly - always carry water, and have bottles of eye drops all over the place.  (SIGH)  I guess I should count my blessings.

Thanks for responding.  Dee

[Dee13333]

Odd...I've had chronic gastritis (they call is GERD now) for the last 10 years now, and chronic sinusitis for about 2-3.  It was all of my "itises" put together that made me suspect a systemic illness to begin with.  The challenge has been in identify it, and adjusting to the new symptoms.  That's for the response.

Dee

[cudagirl]

I think your Rhemy is an idiot.  I have Sjogren's and do not show antibodies to it.  I do however swell very badly in my salivary glands and have terrible dry eyes and mouth.  My biosy was positive.  You symptoms sound just like mine....I have days where I wake up feeling like my legs are covered in sand or water.  I would find a new doctor.  You may have something else too.  Sjogrens tends to be a piggy back disease.  Your doctor needs to find out what you have.  Don't be afraid to look elsewhere if you are not getting what you need.  How is you Sed rate and CRP?

[Vagabund]

Well,I think I fell simillar. Dosn't matter  how long  I rest I fell even more tired.
I have chronic seborrea, gingivitis, and my dentist told me I have to chek blood. She even ask me do I have Sjogren? !!!
Well, I have been already checked in the past for all spectrum of illnesses but it look I'm perfectly fine (except chronic gastritis and chronic sinusitis).
They told me not to warry-but you   probably   did heard that story from many of them .Sorry for my English. Good luck
                                                                           Tanja