So..... I don't belong here

[jaygee]

All the blood tests are back and I'm negative for everything.

Following receipt of a letter from rheumy to my doctor, she sent a standard letter for me to go in to see her.  It was clear when I got there that she hadn't read the 3 page letter from the rheumy (said she'd not even seen it) - so how come I was even there?

Anyway, she had the remaining blood tests and everything is negative.

So, I asked her what we do now as my dry eyes and mouth are not in question (quadra plugged).  She says well you do have the carpal tunnel, and I reminded her I have this pins and needles in my feet too.

So the conclusion?  It's all due to the menopause.  And although I can't sleep, her best advice is to take ibuprofen before I go to bed each night, which will also help when I wake up so stiff I can't walk each morning.

I see the rheumy again on 18 July.  I am going to go, but feel so foolish.  xx

[SueAnn]

Jaygee,

Just because your bloodwork is negative does not mean that you don't have Sjogrens or some other AI disorder.  Many people on this site have negative bloodwork.   I am being treated for my symptoms and I just had a barely positive ANA and an inconclusive lip biopsy.  My rheumy said that it those things didn't matter as much as what I was telling him was happening, dry eyes and mouth, joint pain, and stiffness just to name a few.

Go see the rheumy and keep a journal of all the symptoms that you have.  The one thing that I have learned is that you have to advocate for yourself when you have an AI disorder because many times the doctors are too busy or unconcerned to keep on looking. 


Sue Ann

[harrigan]

Totally agree with Sue Ann - you have the same symptoms you had when they drew the blood to test it and this is what they should be treating, not some data on a sheet.

You belong here JayGee as long as you want to be here.  There are many on here who don't have the blood tests to prove their symptoms but that doesn't make them better.  What does work in some way is being supported by those who know what we are going through.  Take your symptom diary with you when you see the rheumatololgist again and explain that you know many SS sufferers are sero-negative.

I really know how you are feeling - the waiting part is awful and then you start to doubt what you know you is happening to you.  Hang on in there, post often and remember you are among friends on here, XX Ailsa

[eyeamdry]

Also remember, if you have been diagnosed or not for Sjogrens, the treatment for dry eye and dry mouth are the same.  There is no magic elixir that fixes Sjogrens.  You can be prescribed Restasis etc. just the same.  Good luck. Lucy

[navydad]

I;ve nerver tested positive for it,, ut my rheummy is convinced I have it,, and getting progressively worse, have you seen a neuro,, they can look at the nerve side of the problems just because bloodowrk came back normal doesnt mean bloodowrk is normal,, I keep tellig my wife that, they do a basic blood profile and it comes ack normal and my wife wil say,, why are you still sick if your bloowork is normal,, SIGH,, I dont try to explain anymore

[jaygee]

Thank you all.  It is so good to feel believed.  The doctor makes me think it is all in my head, and I guess it's true that I would feel better if I had a positive blood test.  This is the pits.  I have learned so much here, so I will ask the rheumy to treat my symptoms.  Thank you so much for caring.  xx

[DesignerS]

Menopause??  Now thats a new one to me.   I would not stop here with doctors.  It is the most frustrating thing to be treated like its all in your head.  That really upsets me when a dr. does that to people.  You know how you feel, so please keep going forward.  And do NOT feel stupid when you go to the Rheum. dr.  This is about you, not them. 
Sorry if I sound grumpy.  Its been a very looong day with fever and severe pain

Designer

[Scottietottie]

Hi 

Since when has menopause caused eyes to get so dry that they need plugs? It's not usually the eyes that go dry at that time!  I just hate doctors who try to put everything down to hormones and 'times of life'. Patronising pigs!

Take care - Scottie 

[Patze]

Hi jaygee,

I too am in sero negative club here, and have been since all of this started for me - including for having Hashimoto's (diagnosed by a FNA/biopsy).  Scottie's right, doctors that want to pigeon hole women (menopause) are taking the easy way out.  

I had a GP that didn't care about any of my symptoms (thyroid problem), and she even sent me for a thyroid scan (all I kept hearing was I was experiencing menopause and had high cholesterol rates).  The scan proved that I did have a goiter (with multiple nodules each side), and it was pressing on my windpipe, and she still didn't bother to refer me to an endo or put me on any med whatsoever for several more months (until I finally looked over her shoulder and saw the test results sheet, and she couldn't ignore it anymore).  Very scary, but doctors like this are out there.

Can you get a second opinion from another primary maybe?  

Can you get a copy of your tests?  Get a copy if you can, maybe if I knew this when I had the thyroid scan done, I wouldn't have had to suffer so long.

Hang in there, okay?

Patze

[ohiolady]

Jaygee,

I agree with what everyone has said.  My blood work is perfect except for some Hashimotos antibodies.  Sure wish I felt as perfect as I looked.  I asked my doctor once, is there anything else that can cause my mouth to be so dry that I can't swallow food and my eyes to have zero tears?  She said, not that I know of.  As Lucy said, you can receive treatment for the dry eyes and mouth and that will go a long way in helping.  Just a note of caution, be careful taking ibuprofen every night before bed, it will probably ruin your stomach.

Anna

[missy1306]

Some doctors rely solely on test results. For twelve years I had symptoms on and off, severe and not so severe, but I tested negative for everything. It was not until this year that the SSA came back positive. So my new Rheumatolgist tells me, I had Sjogren's all along, but just didn't test positive for it. I can remember feeling so frustrated to hear "No everything is normal" I used to think, well then why do I feel so bad. Not that you want there to be something wrong, you just know by how you feel that there is.

I hope you get a solution soon, but the tests don't mean everything. Take care.

Love, Missy

[missy1306]

Oh, and you can belong here if you want to. We'll listen. 

[lesleyjoy]

Hi another sero-negative one here...like others have said, you can have Sjogrens or any other autoimmune conditions and have negative bloodwork! No one knows why this is so... so stay on as a member and join the (about 50%) of us that know we have autoimmune 'stuff' and are sero-negative.

Stay connected,
Cheers Lesley (New Zealand)

[TerriF]

Even though some of my bloodwork came back positive for ra/lupus my gp said I could just anti-inflammatories or I could go see a rheumy if I liked???     Good thing I opted for the rheumy, turns out the I have ss and not lupus or ra. Even though there is no cure, atleast there is help, so don't feel foolish about seeing your rheumy...sometime's it is the patient that has to push for the answers.

Take care,

Terri

[Crabcakes]

Jaygee,

Just because your bloodwork is negative does not mean that you don't have Sjogrens or some other AI disorder.  Many people on this site have negative bloodwork.   

Sue Ann

I am loathe to say this, truly, but I would have the labs repeated. Even though I was a laboratory supervisor for years, and mistakes don't happen NEARLY as often as ER and Grey's Anatomy would make you belive, it is possible. Usually it is because the person draing the blood did not immediately label the samples and the get mixed up with another patient's blood. This is the primary cause for the mix ups. I would ask for repeat testing, and WATCH them label yoru sample when you are sitting there. Many labs nbow require the patient to initial the sample's labels.

Good luck!