First rheumatologist appt done not sure how I feel

[Billylyne5]

Ok so she was lovely very easy to talk too and she listened so that's good, she said from the symptoms I described it could be sjogrens BUT we need to do the blood tests to see if they show the antibodies and then she said let's hope they don't because then you don't have sjogrens so if the blood work doesn't show it then she says I don't have it. Now I find myself hoping for the blood to show up positive which feels very wrong as I don't want sjogrens but at the moment I am having all these horrible symptoms and feel like I am going mad because nothing is showing up so I have the feeling of being left just to live with the horrible pain etc.
anyway bloods done now I wait for another appointment to discuss the results in 4-6 weeks in the meantime go away and get on with it.
So I am glad she was nice but I fear for where I may end up if the bloods are 'ok'

[cmclien]

Hi, I have to admit it amazes me that a rheumatologist doesn't know that 30 or 40% of sjogrens patients do not test positive on the ss-a and ss-b tests.  Maybe print out a few reputable web sites that state this and take it with you to your next appointment?  Or perhaps just mention that everything you've read says there a quite a few with the disease who do not test positive?  It seems like sjogrens is often not on the forefront of doctors minds and learning or researching it. 
I get what you are saying, you almost "wish" you test positive so you will be believed and treated.  I am assuming she would treat your symptoms anyways?  Have you been to an ophthalmologist to look at your eyes?  Did you ask her about the early detection test (IMMCO) that people on this website talk about?  Some rheumy's will use it others will not.

[cccourt1942]

GM Billylyne:
    You are up early!  In and out of the doctor's office already!!
    I have misunderstood your posts.  I thought you were searching for an SjS dx.  You just want A dx of something...and to possibly rule SjS out?  Is that correct?
    Though many of us have concomitant conditions with our SjS, we really don't know all possibilities of liver diseases or autoimmune conditions which affect the liver.  I do know there is a large incidence of liver "complications" with Sjs.  I have never searched liver on this site, but if you do, you could stumble upon a conversation regarding your more specific concerns.  I am watching this thread as I have two elevated liver results (don't ask me the tests--I'd have to look them up) on my last blood panel.  I should have said "mildly" elevated. The rheumy stated it's something to watch, not something to worry over. 

I hope you find out something before 4 or 5 weeks.  My physician received my results and called me himself a week after my blood draw.  He called me himself as (his words) he was embarrassed he advised I had sicca complex..."nothing" remarkable.  Ha, ha.  He prescribed meds over the phone and advised follow-up a month later.  Don't be shy.  Call and ask after a week.  It is quite likely they will be there!

Good luck hon,
ccc

[litliwlowa]

Hi, I have to admit it amazes me that a rheumatologist doesn't know that 30 or 40% of sjogrens patients do not test positive on the ss-a and ss-b tests.

My rheumy says upwards of 50% of sjogrens patients test negative. Lip biopsy 15% false negatives.

Ok so she was lovely very easy to talk too and she listened so that's good, she said from the symptoms I described it could be sjogrens BUT we need to do the blood tests to see if they show the antibodies and then she said let's hope they don't because then you don't have sjogrens so if the blood work doesn't show it then she says I don't have it.

Which blood tests did she order? That's a long wait for lab results. Did she order the IMMCO test?

[finallyadx]

I would say, and this is only my opinion, you may want to find another rheumy.  If your bloodwork comes back negative, you could still  have sjogrens.  I guess I was "lucky" in the sense that my bloodwork was positive...but there are many on this forum who have not had positive bloodwork and are being treated for sjogrens.  As the previous poster stated there are many who do have sjogrens with negative bloodwork who are currently being treated for sjogrens. 

First line of defense for most with sjogrens is plaquenil and possibly evoxac.  There are also many on this forum who take supplements to help ease or manage the symptoms of sjogrens, but always check with  your dr(s) who are treating you to determine if there are any known side effects or adverse effects with any prescription medications you are taking.

I received my bloodwork results within a week...I hope you receive a phone call prior to the 4-6 week timeframe.

Keep us posted.

Sending positive thoughts your way.

[Kathy57]

My blood work came back negative but I was so lucky because my Rheumatologist has been treating people for 44 years.  He is amazing and he told me people can wait years for their blood work to turn.

He totally got that I was suffering horribly and treated me right away.  (I thank God for this because I have had a run of really bad and incompetent doctors.) 

I was at my last straw when I finally got to see him.  I really had no hope and was very despondent.  Everything he told me has been true.  He didn't give me false hope but he told me he could help me.  It took 6 weeks for the Plaquinil to kick in, but I am a believer!  I don't feel great and perhaps I'll never feel "great" ever again, but I can function!  I can chew, and swallow my food and even enjoy it!  (Perhaps too much because I've put all my weight back on and a little more). 

I have been out if work since August but I actually think I might be able to work part time now.  Just have to figure out what I want to do and who might want to hire a 57 yr old nurse with an autoimmune disease. 

My fatigue is better but I still get fatigued.  I nap whenever I feel like it.  I have always worked full time for the last 38 years.  This "forced" retirement is something I am trying to get used to.  I'm so lucky that my husband is at the top of his game, has great health insurance and has been so wonderful to me.

He is just happy that I can cook, clean, and function.  I am collecting a small pension from my first job and will collect a larger pension when I am 60 from another job I had.  I suppose I could collect social security early at 62. 

This wasn't my game plan at all.  My husband is so supportive and doesn't want me to get so sick again.  He said we would be fine if I just stayed home.  It's hard for me to accept that my once vibrant career is over? 

I know that I should have qualified for disability when I was sooooo sick, but how do you do that when all the doctors I went to prior to my rheumatologist insinuated that I wasn't even sick?  I didn't even try. 

I would not apply now because I can function but I don't think I could physically do what I used to do.  I'm not even sure I could work well part time.  Maybe it's just wishful thinking but I would like to try and I plan on doing that. 

My son is getting married (out of state) in May.  My husband doesn't want me to try and work until after that.  Also the weather will be better.  We live in the Midwest.

I just realize that all I've done is to "talk about me!"  Sorry!!!!!

My point is that you may be sick without positive bloodwork!  You NEED someone to at least treat your SICCA symptoms.  YOU deserve this and I pray that you get the correct treatment that you need.

Hang in there and don't give up!

Kathy

[Billylyne5]

Thanks for the responses, my liver results have normalised now my GP thinks it was the tregrotol causing the problem. My symptoms fit sjogrens and the rheumatologist said that, but being in the UK means it is not so easy to find another doctor, tests wise she ordered ANA,EMA, bone density, vit D, immunoglobulin, DSDNA, extended myositis profile and CK

I AM GOING TO GET SOME INFO PRINTED OUT FOR THE NEXT visit so I can be prepared if results are negative.
I am having so much pain I need something to help 😔

[Head2Toe]

Billylyne5 - I COMPLETELY understand where you're coming from.  As I've said in at least one other post - no one would 'want' SJS, but we all want 'a diagnosis', in part to obtain treatment, and in part to simply validate what's going on.  It's really frustrating and stressful to fit the profile of a disease that has such diverse symptoms, has no reliable blood tests to base an diagnosis on, and seems so incredibly foreign to the vast majority of medical professionals.

The meds being used to treat SJS are powerful stuff with some pretty harsh potential side-effects, so I understand the hesitation in prescribing if there is a concern doctors are not treating the correct disease - but for Heaven's Sake!!!  I, for one, am tired of being treated as if I am nothing more than the results of a panel of unreliable blood tests

As for the number of SJS patients who are seronegative - my 'old' Rheumy (who based his entire knowledge of SJS on one recent presentation he attended through Mayo) told me in our last appointment that 10% of SJS are seronegative.  I made the TERRIBLE mistake of saying 'I've done quite a bit of research on this and I believe the statistics are 30%.'  His body language, his irritated response of 'No - it's 10%!', and subsequent immediate dismissal of me from that appointment (and refusal to look at my neck x-rays until after the lip biopsy) clearly told me that I was not qualified to 'correct' him, and I knew in that moment that if my lip biopsy did not come back positive, he would totally dismiss me from his patient load.  No worries - he seems to have overlooked the fact that he's not the only fish in the sea.  I've dumped him and found someone else.

[warmwaters]

First, the set of tests are sensible, and are looking for a range of possibilities. That's good. The fact that she was good to talk with is also good. So for now, I'd hang in there and find out what the tests say.

If there is no clear diagnosis after the tests, you can always ask, pleasantly, two questions. One is
-Given that I am experiencing all of these symptoms, what is our next step for diagnosis or treating symptoms?
-I've read that there can be seronegative Sjogren's... is it possible that is what we're seeing here?

Here's a couple of British resources
http://www.bssa.uk.net/pdfs/informationsheet.pdf

From the NHS, which specifically calls out the seronegative issue.
http://www.nhs.uk/Conditions/Sjogrens-syndrome/Pages/Diagnosis.aspx
Starting point for the NHS article
http://www.nhs.uk/Conditions/Sjogrens-syndrome/Pages/Introduction.aspx

BTW, I'm an American, but often use the NHS site to look things up, as it is often very clearly written.