Rheumatologist appt./labs back

Not sure if I should have started a new subject or not.......sorry.

Need I say I am full of mixed emotions tonight?!

As expected, most of the bloodwork came back ok and/or negative.

I have 5 pages of lab reports in front of me!! Good grief........still don't know why the urinalysis WBC was at 11 with original and PCP ran another and said it was normal.

C-Reactive Protein, Quant is 6.2 and marked as 'abn: H' assuming that means 'abnormal: High' Normal range 0.0 to 4.9.
I believe that is the marker for inflammation in body, right?

Doctor was really looking at something on computer, referencing symptoms and such...................he did say he didn't think it was a Primary snojerns......and said Secondary snojerns are normally due to another (past or present) condition and/or Medicines.

Vit. D was right at the lowest normal range so he dropped me from 4000IU to 2000IU.

Today he ordered a B12 work up...............

I don't know.......I go back in a month, but WHY!!

I did ask him what a 'spit test' was (like I didn't know!) and he said he did not know!!!!

Any ideas/info/suggestions????
Thanks,
Abby

Does anyone have the red beefy looking tongue? If so..........what do the docs say about it?

You can still have sjogrens with good bloodwork and it's the same way with RA, I had my RA picked up with a hand mri, and it's called sero negative RA, when all the bloodwork is normal, it does throw doctors for a loop but keep pressing, however the next test is harder for sjogrens and painful at least mine was, a lip biopsey but then that too can come back with interesting test results like mine, get this my lip biopsey results was very inflammed, but not very imflammed enough that made my RA doctor laugh and say you have sjogren's my dear...For me the lip biopsey hurt like holy bad and I did follow all the instructions and it hurt me for over 2 weeks, make sure to go home after the lip biospsey to take it easy and ice the site, ice helps the most, my doctor took 2 samples and it was very painful, he had to inject novacain 3 times, others have had it easier than I did. I tried the Evoxac like peggy but had a reaction to it, so currently just doing eye drops and many of them, I wish you luck and a lot of patience in getting a dx, but keep pressing your doctor...life ain't easy and it's been a hard road of bad doctor for me to finally getting a good doctor and I should've been dx 22 yrs ago, if I'd had a better doctor, then life would be a bit better for me...Prayers and well wishes to you, but again if you think you have this keep pressing your doctor for other testing....

I agree with you, No Sjo Girl, that doctors need to listen better to their patients and run the appropriate tests. However, my lip biopsy did hurt as it was two done at the same time and large pieces, (my hubby was with me as I had to hold his hand and he saw the large chucks taken out of my mouth) and again it's a judgement call by the lab processing it and like you said they can flaw the results, exactly...
Many well wishes to you Grannymae...keep us posted as we do care...

wish I knew what else you could get checked for, but seems like the lip biopsy is the only testing left and even that can have mixed results due to the lab personel and if they are even experienced with sjogren's...

Have you had any hand or feet x-ray's or mri's or just bloodwork, if its sero negative RA it will not show up on bloodwork, but will on mri's and x-rays, my RA was found on an hand mri...

Many well wishes to you...

This forum originally showed up in my email, because I tagged Google alerts to funnel info re Sjogren's to my mailbox. The original question wanted to know at what age were you diagnosed. I was "diagnosed" at age 69. The name Sjogren's Syndrome was given to my condition even though ALL tests came back negative: lip biopsy, SSA, SSB,RA, sed rate, lip biopsy, multiple other blood tests. Disorder presented with sudden onset (literally overnight!) dry eyes, dry sinuses, and dry mouth - to the point that I awoke that morning with my tongue stuck to the roof of my mouth. This coincided with a super sore throat. Doctors don't agree about the sudden onset or even what it should be called. Over the past three years, the dry mouth has responded somewhat to Evoxac. Rheumatologist added plaqunil. Not sure it's done anything. Another symptom is an overwhelming fatigue.
I'm keeping the Dentist happy - cleaning every three months, cavities, and crowns! Chewing Trident gum (Strawberry and Citrus) stimulates saliva production somewhat. Using Biotene mouthwash for dry mouth (to which I have added an equal amount of safflower oil to increase Biotene's lasting effect), eye drops several times a day, eye gel at night, and saline to wash sinuses out morning and evening. Mucous membranes inside my mouth are swollen, gums swelled and tender, have trouble swallowing, and my speech has been affected. Tongue red and swollen - cannot eat anything spicy or fried. Skin all over my body is super dry.
The two people who have helped me the most are a dental hygienist (gave me numbing stuff to use when gums get too bad) and a nurse (told me to use Merle Norman "Superlube" lip moisturizer to help dry lips). Go figure!
Have also had numerous yeast infections on my tongue.
Personally, I believe this "stuff" (and I do believe it is autoimmune) was triggered by a vicious viral attack on my system. At my age, one doesn't bounce back as easily as a younger person! :)
It's tough dealing with an invisible disease! We don't look sick.....therefore no one believes we ARE sick.
We can't look back......if this is to be the new me, will just take it one day at a time and keep positive thoughts.
Prayers and blessings to all of you who deal with the various problems of Sjogren's every day!

I am replying way late but basically here's my thought: 1) was the C reactive part of your urinalysis or a blood test? Proteins are usually not associated with inflammation and in the urine can be a sign of recent exercise. That value is awfully high for a urine protein however... As for the doctors and listening, go in with a list of your symptoms and a list of your tests like an outline. Try to line up your symptomology with the tests that have or have not been run. Also, try to include how your flares are running-my original cycles were about 6 weeks. Now, they run according to weather or are very far between and random due to having good meds. Last, Ask to be referred to, or go to, a good rheumatologist. Doctor's are more willing to listen if we do more of the leg work. Sad but true. You know your body, they don't. Get descriptive and precise and show them why your suspicion fits.