update..now what

[sikalot]

i just posted a topic titled possible sjoggy
well seems i had another ana anca and i was now told ssa/b and all are negative... so now what i have all the symptom with high inflamation marker blood test and elevated wbc
does this mean i am not a possible sjogrens person

what do i do now i am still very sick

[navydad]

you can still have it,, I was Dx;ed as sereo negative,, but thre are times i still think i have something else,, its amazing,, all labs come back in normal range and i fel like a truck runs me over every day, actually from sun up to sun down,,

[kindandcaring]

ditto with navydad

seronegative all the way...except I have all the symptoms and severely.
Diagnostics in this area (Autoimmune Disease) has a long way to go till a test can be considered 100% accurate.

And it seems that AI disease can mix with other AI's producing a seemingly unique set of symptoms..yet no markers !

Saying all that...your best bet is for the Doc's to figure it out as much as possible...these symptoms can be caused by other issues or a mix of issues.
Diagnosis can be challenging.

Keep asking your Doc questions..and ask him what he thinks the issue could be.

[Patze]

Hi sikalot,

Let me also welcome you to the board!  Please look around as there tons of topics that might interest you, and oodles of information.

I'm with the others, I too am sero negative, but have high ESR (for several years now), and my CPR goes to the high end of the scale often.  I've been diagnosed with SICCA and not SJS, but as long as my symptoms are medicated/treated, I can deal with it. 

What did the doctor say to a high WBC?  Is your doctor willing to treat your symptoms?  If not, can you get a second opinion maybe?  Or would your primary be willing to work with you?

Hang in there and take care -

Patze

[lynnmarie219]

Hi Sikalot and welcome to Sjogrens World!

I'm with Patze...will your doctor treat your symptoms without positive labs? If not I would get a second opinion and try to find one that does....its nice to have a diagnosis to know what you are dealing with...but the first priority should always be to have your pain and other symptoms treated!


Good luck and let us know how you are doing!

[Redetha1]

I had to have a lip biopsy before my showed up Sjogrens.  So yes, you can have it.  This is a great place for info so keep coming here.  Everyone is wonderful.  Hugs, Redetha

[texasgal]

I'm not familiar with all the terms used in these blogs.  All I know is I tested positive for Sjogrens with a number 8.  The blood work I had done last month showed my RA factor was 735 (14 and below are normal).  My doctor also said some other kind of ANA antibody showed up and she was going to get with another doctor to discuss but I've never heard anything.  I dont even know what an ANA is.

I have yet to set an appt with a rheumotologist.  Frankly, after the cost of the MRI on my brain and the nerve test my neuro did.......I'm worried they will want to run other tests that I simply cant afford.

-Lisa

[lynnmarie219]

Hi Lisa,


If you want some good information on lab tests and what they are used for try looking them up on http://www.labtestsonline.org/ 


This is a good site and I use it a lot for information! Hope that helps you out some!

[Patze]

Hi Lisa,

The costs are just amazing, aren't they?  Shoot, it's so expensive that I'm having to push retirement back several years, so I can imagine how hard it's been/will be for others.

Anyway, you've mentioned that you've not heard anything from the doctor, call them and ask what she plans on doing (maybe a referral to a rheumy?).  The waiting as one doctor talks to another is so maddening!  I hope that you hear something soon!

I love the sight Lynnmarie posted, I too use it a lot, can't seem to get the doctors to break it down anymore.

Hang in there and take care -

Patze