New member. Confused.

[meike]

I'm happy to have found this website. I am a 28 year old female and am being tested for Sjogren's at this moment. I have read a lot about Sj?grens, but I am a bit confused about the diagnostic process. I hope some of my confusion and uncertainty can be taken away here.

I have extremely dry eyes, which has influenced my entire daily life for the past six months (test results: Schirmers 2 mm/ tBUT 4 seconds).  In addition, I have some other symptoms: the general feeling of illness, higher body temperature, a higher heart rate, and especially extreme fatigue during the same period. I sleep 10 hrs per night, and during the day, my fatigue can suddenly come up. My eye specialist and general practitioner have been thinking of Sjogrens, and referred me to a rheumatologist. I am being tested at the moment.

I don't experience dry mouth (occasionally it feels somewhat dry and my tongue is burning sometimes, but I don't need to drink when I eat, etc). My unstimulated saliva flow is 0.2 ml/min (3 ml in 15 minutes). I know that's well above the "Sjogren?s limit", but perhaps a bit below normal average (?). The ANA test was negative.

I'm wondering whether a lip biopsy would be the natural thing to continue with? I'm asking, because my first rheumatologist told me that the biopsy would be the next step if the antibodies test would turn out negative, while the second rheumatologist was in doubt, but her main argument related to the possible complications of a biopsy (loss of sensitivity). I am confused now. Would the biopsy give me more insight into my problem? Would it still make a difference in either excluding or setting the Sjogren's diagnosis in my case?  I wonder if there is a strong relation between the outcome of the biopsy and the test result of saliva production. That means, can I already expect the biopsy to be negative, because saliva production flow was 0.2 ml/min. Or is it not that simple?

My specialist left the decision for the biopsy in my hands. I tend to go for it because I want more certainty. I would like to get more insight into my condition. But maybe it's good to ask beforehand: are there good reasons not to do the biopsy? At this moment, I'm just frustrated about not knowing what causes my eye-problems and my general physical weakness, and feel uncomfortable having talked to 2 rheumatologists who have different opinions about what the next step should be. Many of you must have gone through this process and I hope there is some good advice here. Thanks so much for letting me share this.

Meike

[Pisces24]

I understand your confusion. Autoimmune diseases cover a heck of a big territory. even the doctors have trouble diagnosing them. Also generally autoimmune like to have company with something else too.

Have you had your thyroid levels checked? If your thyroid is off it can cause a bunch of different symptoms. Mine was underactive so park of that was fatigue too. I tested very high for SS-A, SS-B and ANA which I understand are the direct points to Sjogrens. Have you had those tests? The ANA tells that the body is fighting something adn the other two point to Sjogrens.

As to saliva, I never had a "flow" tests. I am 54 and up until 10 yrs ago had 5 cavities my whole life!!  Now I get 3-5 per year and have to drink water when eating a sandwich. I take 100 times better care of my teeth than I ever did too. I seem to have saliva when I see the dentist though.  I blame mine definitely on Sjogrens.

I consider anything like a lip biopsy an extreme measure. Are they suggesting it to make their job easier??  Some drs can only diagnose out of a textbook. I guess it depends on how you feel and your symptoms. So far mine are pretty mild but in my 6 yr journey to find a diagnosis, if I had went along with everything the diff drs told me I would have had at least 2-3 more biopsies which were NOT necessary. Me I am not interested in letting drs go on fishing expeditions in my body just to make them happy. Lots here have negative results and still end up at square one after going thru all the heck.

I go to a teaching/research hospital here in Iowa and all my -ologists are there. I am very satisfied going there as they are training them to think both in and out of the textbook. I had 6 yrs of going to individual "specialists" who were all duh? or lazy or gave me the royal runaround.  Autoimmune is tricky as doesn't fit textbook definitions most of the time. I get the main dr and 1-2 learning there and all my records are there. I would recommend that much more than the individual "so called specilists". And they don't fight among themselves either. LOL

Good Luck and Welcome!

[irish]

I guess at this point I would skip the lip biopsy if it was me. You are just getting into the doctoring process and with the negative blood work a negative lip biopsy would prove nothing at this time.

Further down the road the SSa,SSb may come up positive as may the ANA. My tests took years to turn positive and mine didn't turn until after the lip biopsy was positive. My rheumy was pretty sure my lip biopsy would be positive as my glands were swollen on both sides of my neck and infected. If it wasn't for that I would have skipped the lip biopsy.

As it was I joined a Sjogrens study a couple years later and that is when my blood work was all positive---after about 8 years of negative. The sjogrens study also checked my salivary gland function and that was way down. I never had severe dryness for years. I had mild dryness and always sucked on sugar free candy, etc and never had a clue that I should tell the doctor.

My eyes did not get dry until after I had the lip biposy. Sooo, what I am thinking for you is to give it some more time and see what happens. The docs should be treating your symptoms anyway in spite of not having positive tests. If you ache they should treat the pain, ie NSAIDS, possibly plaquenil for joint pain and fatigue. There is a lot that can be done to help make you more comfortable. Talk with your doctor about this and see what you can come up with. Maybe do the lip biopsy in another year. Give the blood work time to convert.

Just to let you know, the blood work can convert back to negative. My SSa converted back to negative and my SSb is still positive. My immunologist said that once you have positive blood work and the symptoms you have the diagnosis and if the blood work converts back to normal, you still have the disease. Good luck. Irish

[Patze]

Hi Meike,

Let me also welcome you to the SJS World and family!  Please do look around as there are tons of information to be had by using the search engine located in the upper right hand side of this page.  If you can't find what you're looking for, please ask away as there is usually someone about that just might be able to help.

Pisces has a good point, I too would have your thyroid checked just in case because it can cause some of the same symptoms that you are experiencing.

My eyes are still a mess but not nearly as bad as before the thyroid was "controlled" (my sight got so bad that I had to quit driving as I could not see well enough any longer.  Now that the thyroid is "maintained", and the plaquenil had time to kick in, the peepers are doing better - they are still dry as all get out, but I can see okay again).

There are many stories about the biopsy here and I won't bore you with mine, but if I had it to do over, I would not (doctor did a lousy job of it, and lab didn't rate according to the standard at the time).  I will tell you that a lot of members have had the procedure done and had few to no problems with their procedures (there are a few of us that didn't have a very good experience).

Now the question is will your rheumy treat your symptoms without a biopsy?  I was lucky that my rheumy treats my symptoms without a positive test and for that I'm most grateful (I'm negative for everything including Hashimoto's, but a FN biopsy proved that I have it).  When I was stressing out about being sero negative for SJS, a fellow member asked me why a label was so important as the rheumy was already treating my symptoms (the rheumy labeled it SICCA for the first several years and has now classified it as SJS.  At this point, it really doesn't matter what he calls it anymore)? 

Good luck in your decision and keep us updated, okay?

Take care of yourself -

Patze

[Joe S.]

Welcome to the forum Meike.

[soycoffee]

Welcome to the Forum

I am scheduled for a lip biopsy on December 14th; I have positive ANA and SS-A but not SS-B, and am being treated by various doctors for Sicca Syndrome or for Sjögrens or for both!

Like Irish, the lip biopsy is part of a long list of diagnostic tests that I'll do as part of a diagnostic research study at the Sjögren's Syndrome Center here. The rheumy is slowly coming around to the idea that I do have SjS.

What I anticipate (use the search feature here, and search on biopsy, or lip biopsy) from the way forum members have described it, that the worst would be that I would go years with a hard spot in my lip, like after I was hit in the mouth with clod covered rock when I was 12-years old. Don't know when the scar tissue disappeared, but it did go away. The best would be that they really know what they are doing here, and there is no big fuss beyond a couple of days of pain and a couple of weeks of soreness.

I, too, like others in this thread, would not have the lip biopsy done if the blood tests were all negative. There's an active cohort on the Forum of people who are sero-normal (i.e. sero-negative) for Sjögren's, but have a strong symptom picture.

What I hope is gained from the study is another chink in the wall that says "lip biopsy is the diagnostic gold standard." That is, I'm doing it so, I hope, others will not have to do all the diagnostic tests we subjects will be doing, and that a clear diagnosis can be established with three to five tests that are definitive.

Welcome,
Soycoffee

[meike]

Thank you so much for your replies. I am so happy to have found a place where people understand the way I feel, including the confusion about the diagnostic process.

I was already checked on my thyroid levels twice, and they were normal.

It's so good to hear about your ideas about doing the biopsy at this stage. It looks like it might be a bit "early" for that, from your replies. I will postpone my decision a bit, and will think thoroughly over it again.

The main thing, I guess, that I have to accept - which is maybe hardest at this stage (having had those symptoms for "only" half a year) - is that either way, I have to accept that I have symptoms that I will have to deal with. Whatever the label. Until now, much of my energy and thoughts were directed towards the biopsy: it somehow feels good to believe that one more test would provide me with the final answer. But I start seeing that this will not be the case, and that chances are large that I will fall into a "grey zone", in which I still will have to deal with the symptoms anyway.

As said, I will think a bit more about the biopsy, and will start reading a bit more here. I think that will at least help me making my decision. Thanks again.

[Meld256]

Hi meike,

I also want to Welcome you to the site! 

I hope you'll find lots of information, support and understanding here.   This really is a place where we discuss almost everything in a comfortable, encouraging way.  Sometimes it's just so reassuring to know that we are not alone in our worries and concerns, and that others care.

Confusion about the diagnostic process is common with all of us.  To make matters more complicated, even though many of us have the same symptoms, we are also different in the way they manifest themselves.
It sounds as if you are arming yourself with all the info. you can about having a lip biopsy or not, and that is good.  You'll ultimately make the best decision for you, personally.

And accepting dealing with symptoms...yes, that can be a long process.  Symptoms that none of us want, and yet, here we are seemingly "stuck" with them.  I can tell you that acceptance will come, it may not be easy at times, but please remember that you have a new lot of friends to help you through that journey.

Please keep posting.  We look forward to hearing more from you! 
Melinda

[meike]

It's been half a year ago now that I've been asking for some advice here. It's been useful, and I have been thankful for your replies. So now I wanted to give you a brief update.

A short summary first: I've been sick since a year; my eyes are the worst, but I've had a long period of general misery, enormous fatigue, etcetera. Feeling much better than the last time I posted here though. But that's pretty much the result of healthier corneas due to eye treatment. My eyes have been terribly painful for many months. Now they are just uncomfortable. I'm still plagued by the fatigue, though.

To make a long story short; the blood work was negative for Sj?grens, but I decided to go for the biopsy, which was recommended strongly by my 3rd (!) rheumatologist, who specializes in Sj?grens and SLE, but also told me that he could treat me as a Sj?gren patient if the biopsy would turn out negative. I seem to have found a very good doctor.

The biopsy was done 3 weeks ago (very well done. There is of course a scar left that I feel, but think it will disappear after a while. I've hardly felt anything of the biopsy, just a swollen lip for 5 days or so).

The biopsy turned out positive (focus score 2.2) and thereby I was officially diagnosed. It feels weird. I have the feeling that the last uncertainties are taken away; but it is strange to know that I will have to deal with this for the rest of my life (I'm still only 28 years old!). At the same time, I can start focusing on treatment, and on how to get this thing under control, find ways to live with it, etcetera.

The diagnosis is somewhat enlightening in thinking how to deal with my environment, my work, formal matters, etcetera. In some way I'm relieved that I'm out of the grey zone and offically labeled. (sounds weird to say this like that).

I also realize that I got this diagnosis relatively quickly; only one year has gone by since the trouble really started (well, I had  signs in the 2 years prior to that).  Again, as strange as this sounds, in a  way I'm also thankful for this rather quick process...  I'm positive that I will work out how to live a relatively normal life, and know that I will find lots of information here when I'm confused, or when I just want to get some support.

I'm far from functioning optimally, still working only a couple of hours per week, but I feel that there is space for improvement. And I hope that medications will work well for me. Let's see...

Meike