What to do now :-S Every single test back normal. But I have the symptoms :-S I just don't know what to say.
I'll follow your question as I could soon be in the same boat. Plan to have blood testing soon. From what I have learned from those on this forum...the blood tests aren't definitive...I don't think the blood tests can confirm OR rule out Sjogren's. Kinda why I haven't rushed out to get my blood tests yet...that and a $7,000 ins deductible! :-/ Curious to read responses...
Some Drs. will Dx on symptoms alone. I was taking supplements that did not allow some of the markers to show.
Gem, I can't speak for sjogren's since my bloodwork always comes back completely textbook for the disease (even though I don't suffer badly with symptoms) but what I will say is that when I was in hospital last year for gut trouble that had been ongoing for years, all investigations were COMPLETELY negative. I was being told if the condition continued I would die from weight loss (was in early organ failure) and had my mental health questioned!!
Skip on a year and a half and I am now showing positive in my blood and stool tests for inflammatory bowel disease... but it took years for that to show.
Seronegative doesn't mean the disease isn't there, or the symptoms aren't troubling. Don't get too hung up on testing. It's real to you.
I just want them to treat me, I am at the opthomologist next week and I pray she will help me.
Hi Gem :)
I'm sorry to hear you do not have a 'label'. What is important now is to get the symptoms treated. Presumably your eyes will measure dry. The opthamologist should be able to advise, or prescribe drops that will help to alleviate the symptoms and plug your eyes if necessary.
As Joe said - there are doctors that will treat on symptoms.
Even when doctors do 'treat' - its not a cure. It really is a case of alleviating what can be alleviated.
Take care - Scottie :)
Has your rheumatologist mentioned a lip biopsy?
I might consider it if all of my blood work were normal but I was miserable with symptoms so that I could get answers and a clear treatment plan. If the lip biopsy comes back negative as well, that would be a sign to me that it's time to explore what else could be causing my symptoms.
Gem,
It is very frustrating (each time our bloodwork shows this), yet we live the symptoms each day.
After 3 different Rheumy's & 3 negative blood results...I found a new doctor who treats symptoms.
I was so relieved when she told me that she does not believe in "chasing" blood results & lip biopsy results.
At the end of the day, that is all I wanted. I am now getting some much prayed for relief from Plaquenil.
I hope you can find a doctor who shares the same perspective my doc does.
Good Luck.
SjoDry
Hi Gem
I know how gutting it is not to get positive bloodwork-I fall in that category. As the others have so rightly mentioned is your consultant prepared to treat you on symptoms alone and is he prepared to still keep you under his care?
If the answer is no to either of these please seek out another one and though it is tiresome try again.
I've not received treatment but I'm on the verge of that as I've developed extraglandular complications and my rheumy is just about ready to call it Sjogrens.
Don't wait too long for that either
Goodluck
Sarah x
I am in the same boat. All bloodwork normal. Normal Schirmer's test but dx of evaporative dry eye. Meanwhile the symptoms continue. I never got a call back from the rheumy I last saw after having the ophthalmologist consult! This is a doctor at Brigham & Women's hospital in Boston (one of the best in the country, I would think). So my question is, do I keep chasing after a rheumy who will diagnose on symptoms alone, or just manage as best as I can? I do not have the fatigue and joint pain so I am able to function ok right now.
My blood is as normal as anyones and my lipbiopsy as well. But I got a confirmed diagnose based on a salivary gland scintigraphy and my eye tests which are severe on every mark - schirmers, the rose bengal - everything.
But my blood and lip: Normal. And they have tried every way of testing it now... (Europe - free healthcare)
Gem, you may wish to consider having your Opthamologist do a Schrimer's test on you next week to confirm how dry your eyes are.
The Schirmers test can be also considered another marker for possible Sjogren's diagnosis. Its a very easy test to undergo, no pain, the Opthamologist just places a couple of very small strips of paper in your lower eyelids to measure how much tears you produce and will tell you the number. Its also really important to track eye dryness and set a baseline for measuring whether your eye dryness (if you are experiencing that) is getting worse.
I would also advise to share the results of this test with your rheumatologist as it would support your possible diagnosis of Sjogren's if that is the issue with your eyes.
Daisy
Daisy, I have done the schirmer test and it was 2 in each eye! Opthomologist says I have Sjogrens.
Gem:
It sounds like you might fall into the Sero-negative blood group for Sjogren's then. There are certainly a significant number of people in this forum who are in that same category. You also should know that a negative blood test result does not at all mean that your Sjogren's symptoms are in any way less debillitating than anyone else's are. I hope you also shared your Schrimer results with your Rheumatologist as it is very important that you get comprehensive treatment for all of your Sjogren's symptoms whatever they are in addition to your dry eye issues.
I'm sure you've already been informed of the possibility of getting a lip biopsy if you feel you need to, but if your symptoms are being adequately treated, I would suggest that that is really what is most important unless you need official test result paperwork for whatever reason.
For myself, all of my blood work is strongly positive with ANA and SSA and SSB positive, as well I have many extra glandular manifestations of Sjogren's so I've never needed to undergo the lip biopsy in order to get satisfactory medical treatment of my Sjogren's, but many on this forum have undergone this test and could better advise you as to their personal experience with that procedure.
I wish you all the best in your journey whatever you decide to do.
Daisy
Quote from: gem.j on January 14, 2013, 02:36:05 PM
Daisy, I have done the schirmer test and it was 2 in each eye! Opthomologist says I have Sjogrens.
I had one eye on zero! (And still clear blood tests)
Blood work has poor sensitivity with Sjogren's. Having normal blood work is inconclusive.
Hopefully, your doctor knows that. If not, educate him :)
Styx