New member... just looking for some support :o)

[seren]

 Hello to everyone, I live in Wales UK and and am currently awaiting a firm SjS dx.  I have had two positive ANA with speckled pattern, consequent ANA's have been negative and sjogren's markers SSA & SSB (I think?) were negative.  I have also just been dx with hypothyroidism (no thyroid antibodies).  I have many symptoms including the usual dry eyes, dry mouth, joint pain, terible malaise and fatigue, memory probs, pins & needles, very frequent swollen glands, mouth ulcers, temperature probs, jaw pain etc. etc. etc

I am having a lip biopsy on thursday and am so worried that the results will be 'negative'  My rheumatologist thinks I may have early SjS but despite positive ANA's and eye & mouth dryness I think he will only dx me if the lip biopsy comes back positive.  I have been unwell for about 18 months (compared to some, I know this is short and havent really felt well since before this and I so need to know exactly what I am suffering with as its driving me mad.

I suppose I need to feel vindicated and to be able to say to people I have XYorZ.  Has anyone else had minimal or no positive blood work despite symptoms and a positive or negative lip biopsy result also??

Sorry to be so long winded (a fault of mine ) and I would really be grateful for some replies, thanks in anticipation of this!

[baddabingtim]

Yes - I have been in limbo for about 8 months - dry eyes for 2 years - dry mouth for 8 months - I am negative after 3 sets of blood tests and 2 lip biopsies - I was just told by my rheumatologist I am totally negative - so where does that leave me - he called it an idiosyncrasy - the idiots of medicine have no clue

[jonnell]

Welcome Seren,  My name is Jonnell and my 4 year old Jenna has SJS.  You can still have sjs without positive blood work.  Jenna had a positive ana and positive ssa and ssb test thank God we didnt have to do the lip biopsy that would be hard with a 4 year old.   You sound like you have a lot of the symptoms.  There are more knowledgeable than me on this site who can answer your question.  I am from New Jersey in the US.  We are all supportive on this site and there is lots of love and caring.  Thoughts and prayers are with you.     Hugs and Kisses  Jonnell and Jenna

[missyb]

Dear Seren,
Sorry you have health problems  But since you do, welcome to our group and hope to be of help 
Re feeling vindicated, don't get your hopes up  , if you get a firm diagnosis, people will just look at your cokeyed and wonder what it is, or think it isn't nearly as bad as what so and so has, or worse yet, may have heard a little something about sjogren's and say "Oh you're just thirsty, drink some water" 
People are weird is the conclusion I've come to. All the ones who thought I was making up my problems, when I got a diagnosis, I was excited to let them know I really was not a nutjob so I wouldn't feel crazy, and they just acted like I was now making up a disease to jusitfy myself. I give up! LOL
But anyways, welcome, and I hope you find what helps you here.
Missy

[seren]

Thanks to those who have replied so far....and all your welcomes, I will post again soon..take care all 

[lynnmarie219]

Hi Seren and Welcome to Sjogrens World!

Yes...you can be diagnosed without positive test results and the important thing there is to insure that you have a doctor who will still treat your symptoms even if you are negative with your tests. The dry mouth, eyes, pain and fatigue can all be treated with different medications or over the counter products which should help give you some relief.

Good luck with your lip biopsy on Thursday.....to get the best results on this please make sure that the person has done MANY of these procedures and the lab has read and interpreted MANY of the specimens.  I had one done by someone who did many of these...she was great and it gave me the answers I needed for a diagnosis without any problems afterward. I wish the same for you....let us know how it goes!

[Redetha]

I think there is not a short time for anything when you are feeling bad.  This site does help you not feel alone.  I know that because I do not always post but I read when I am not at work.  My blood work all came back fine but my lip biopsy gave me the diagnostis I needed.  My right parotid gland is always swelling and guess what else...stones.  It has now "given birth" to three stones.  This was not a fun time because I had surgery to remove them.  But enough about me....this site is the one place you can ask any question and not be told you are losing it or just ignore it.  Someone else has probably experienced the same thing and can give you insight.  Please keep asking questions and come here as often as you like.  The moderators here are really GREAT !!!

[Scottietottie]

Hi Seren   

Welcome to Sjogren's world.

I can't add to what the others have said about your appointment and the SjS but I can comment on the hypotghyroidism - from whatever cause.

If your thyoid has been underactive for a while you will fell a LOT better when you get the correct medication for it. It can take a while to balance out - but what a difference it makes. recently I thought my SjS was flaring and it turned out I was undermedicated thyroid-wise (thyroid meds quite often need adjusted up and down)  Once I'd been on my new dose for about 4 weeks I felt like a different woman. Lots of aches and pains that I was blaming on SjS sort of melted away and they are a real mood lifter too, which makes dealing with stuff easier.

It also helps brain fog a lot too.

Good luck with your results.

Take care - Scottie 

[Chickpea]

Hi Seren

Just wanted to add my welcome from Brighton, south coast of England.  There are lots of us here from the UK so I hope you can join us on Wednesday night at 7 pm in the chat room.

Good luck with your lip biopsy.  My rheumy was happy to diagnose with just the Schirmer's Test - he's a very confident bloke! - and then his hunch was confirmed by blood tests.  My neurologist still isn't convinced it's the whole answer but I'm just pleased to be getting some treatment.

We'll be thinking of you on Thursday.

Take care - Chickpea

[seren]

Just to reiterate..many thanks for all your posts you have all been most welcoming....I will take comfort when having my lip biopsy that some of you have had this done and also that ALL of you know what its like to have this 'pain in the neck' of an illness (putting it mildly).  Best Wishes & Godbless All!

Incidentally, has anyone had negative blood work but a positive lip biopsy ?? Thanks

[lelole]

Hi Seren and welcome 

I am in a similar situation, though a few steps behind you.  I am in the UK too (Plymouth, Devon). I have hypothyroidism already (for about 10 years) which flared up after having my daughter 2 1/2 years ago.  When treating that didn't make the fatigue and joint pain go completely, I thought I was going mad, but when my eyes were diagnosed as being dry the pieces of the puzzle began to fit. 

I too have neg bloods, and am due to see the Rheumy on Thursday to see what his take on this is, and whether he will go for a lip biopsy.  Apparently lots of Rheumy's won't diagnose when blood tests are neg, so you are lucky to have one who understands you may be seronegative.  (Hopeing mine is too!!)

I can only agree about the hypothyroidism - many of the symptoms overlap, so ensuring your thyroid levels are optimal is very important.  You should be aiming to get your TSH at around 1 (although the upper limit is 5.5 - it is not ideal), and your T4 near the top of the range to feel best.  If you need more thyroid info PM me.

Anyway, best of luck, you have found a great and supportive place, please come back and tell us how it went on Thurs...

Take Care

Leah

[staryeye]

Hi Seren,

My blood tests were all positive and my lip biopsy was negative, after taking out a lymph gland they said it was positive.  So the tests are really a guide line rather than to be used to diagnose anything.

You never know something might turn up in the next blood test - anything is possible with Sj?gren!

Shas