My SSA and SSB results were negative and my GP has concluded this means my Sjogrens is secondary. Of course this diagnosis has left me concerned as to what the primary might be. Think I'm his first SjS patient and we're both on a learning curve. Just wondered if his diagnosis is correct?
Chico
I'm new at this, too, but my primary care physician seems very much aware of Sjogren's. My SSA and SSB results were also negative but he said, and I've also read, that negative results do not rule out Sjogren's. The only definitive test is a biopsy of a salivary gland on the inside lip. Google Sjogren's Syndrome and read everything you can.
Also, I've read that primary Sjogren's is basically just dry eye and dry mouth, whereas secondary Sjogren's can be more complex. In my case, my physician has set me up to see a rheumatologist, but the earliest appointment I could get is in January. Hope to know much more then. Good luck on your journey.
Hi Chico :)
I've never seen it put that way before although I've read about people having negative bloods. I thought that SjS was Primary if there wasn't anything else obviously with it - i.e. RA, lupus etc.
If your doc thinks it's secondary it's up to him/her to figure out what it's secondary to. As far as I know a lot of what it could be secondary to would show up on the same series of blood tests. Has he re-sceduled more tests?
Take care - Scottie :)
Well he scheduled me to go to Johns Hopkins in Jan. A Rheumatologist. Am confused as to whether he'd be looking for SjS confirm or what could be primary. Such as RA?
Chico
Hi Chico :)
Is it possible that your GP knows a bit about SjS but not actually that much? A lot of GPs don't. You'll probably get better answers from the rheumatologist. Write down questions before you go and a list of symptoms as well. It makes it easier not to forget something.
Try not to worry too much until after you've talked to the rheumy and hopefully, he'll allay fears you have anyway. Easier said than done - I know.
Take care - Scottie :)
I don't think there is a GP out there qualified for this. My Blood tests were negative - but that was from an ENT refereral - I also had 2 lip biopsies and will get results from second on wed - I am pretty convinced I don't have SJS - but I went through with 2 biopsies anyway - I am someone who wants a definite answer rather than just a treatment option - as there are many illnesses that cause these effects
Found this (partly quoted):
Primary Versus Secondary Sj?gren?s Syndrome
Some people with Sj?gren?s syndrome have certain auto antibodies circulating in their blood called anti-SS-A and anti-SS-B. They are strongly but not exclusively associated with Sj?gren?s syndrome. Other people with clear evidence of primary Sj?gren?s syndrome do not have those antibodies.
From the site: http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp#versus
So guess Scottie is right, don't worry etc. But hey, Jan. 7, 2009 seems a year away right now!
Chico
Hi Chico,
All of my blood tests were negative for SjS and/or Lupus but my Neurologist has recently confirmed a diagnosis of SjS. He has based this on a full medical work up over the last 5yrs and has told me l am Seronegative as a lot of people are. Not many consultants will stick their neck on the line and give confirmation when blood work is negative, but luckily l have been consistent in my syptoms and my Schirmers test was positive, l have Neuropathy, Hemiplegic Migraine with right sided weakness, chronic fatigue, joint problems etc...MS was ruled out due to having a series of clear MRI's but that was their initial thought, but being a 'newbie' to SjS l have been doing lots of research and discovered how similar to MS our symptoms are.
l think my diagnosis was also based on my genetic history as there is a link to Multiple Endochrine Neoplasia on my fathers side, being that he died of Medullary Thyroid Cancer as did my grandfather. Interestingly though it was my mothers side that suffered with Rheumatoid Arthritis and heart problems. So l didnt have very good odds really....lol!
Take Care, Caz