NEW TO WEBSITE - NEED HELP - TESTED NEGATIVE THREE TIMES!!!

[LETITSNOW]

I have been very sick with dry eyes and mouth syndrome My eye doctor was treating me with retasis and systane drops  but these were not helping. My GP had me on pilocarpine for dry mouth. But this only works for a few a minutes.

I thought it was so bad that last August I made an appointment  with a rheumatologist. He did a quick exam and sent me for blood work and a urine test and sent me home. He said that if I had it it would be Primary Sjogrens and he would treat just as I was be treated by my other doctors. I didn't mention that I had to wait several months to see this doctor and drive 5 hours to see him!

He sent me a letter in the mail saying my results were negative. GEE, THANKS! MY neuro-ophthal has tested me twice since, the latest during a bad flare up May 25, 2010, the pilocarpine no longer works, ANTI SS-A ANITIBODY NEGATIVE
ANTI SS-B ANTIBODY NEGATIVE.  I just couldn't believe it! I have never felt so dry. I have no saliva at all. I can't sleep!
My tongue is dry! I have a raw cracked sore spot on the outside of my mouth that won't heal! I need help! Tongue is raw!

In the October I got very sick. I had swollen lymph nodes in my neck &could not turn my head. I went to my GP. They sent me for Lab work. I should mention that I am  a 52 year white, female. I had MONO! I was tested again for it in Jan and it showed positive again. I have read that that can be a precursor to autoimmune diseases. My sister has scleroderma.

I should mention I suffer from a  another rare chronic illness PseudoTumor Cerebri.I have only recently started receiving treatment for it. But thats whole different story.

[Scottietottie]

Hi Letitsnow 

Welcome to Sjogren's world. We can't diagnose in here but we have quite a few members who have been dxd and treated on symptoms but who are sero-negative as far as blood work goes. Is there any chance of getting to see another rheumatologist? The only treatments given for dry eyes and dry mouths are ones that alleviate the symptoms but they don't cure them.
Some rheumatologist would give you Plaquenil if they suspect Sjogren's. It can help with fatigue, brain-fog and pain.

I hope you find the site useful.

Take care - Scottie 

[LETITSNOW]

Scottie,

Thanks for answering. I live in a small community. There are no Rheumotologists in this area.

The closet ones are several hours and several months away in a large city.

Can a GP prescribe Plaquenil?

Thanks,

Let it Snow

[Dolly Dimples]

Welcome Letitsnow,
                         Sorry you had to look for us, we understand your frustration
                                                    as many of us have had the same brush off from these Medics.
                           Come over to the Discussion board where your thread will get more attention ,
                                and you will learn lots more about this curse.
                                                Take care Dolly                                           

[Pegasus47]

Sero-negative doesn't mean much.  Sometimes it takes a long time for serology to become positive.  Remember it takes on average 7 years to diagnose Sjs. 

On the other hand, having the symptoms under control is key.  I happen to take the natural remedy route.  Works for me.  Idea is to stop the immune system attacking one's one tissue contineously until all the cells won't function any more.  Early treatment is vital. 

Hang in there.  We feel your pain.

Pegasus

[Scottietottie]

Hi again 

I'm afraid i live in the UK so I don't know the sityuation with what GPs in the US can prescribe.

Take care - Scottie 

[SLEEPY101]

From my experience GP Drs do not like to precribe Plaquinel because that is not in their speciality. At least mine have not,they are even weary perscribing me Celebrex.

Dont give up, you might be on a very long road. I had my first postive SSA test 9 years ago. Then almost 3 years ago I started having constant pain and other probelm they started routine blood testing again. I had several postive SSA and ANA tests. My nuerolist and GP thought it was SJS was because of the negative SSB the RA dr told me know it must be Fibro. Now I have not had any changes in the last few years so I am switching Drs and starting to whole process over again. If your insurance allows you I would suggest to try out a Mayo clinic or research hospital. I have an HMO so that is not possible at the moment. Also start a health journal, the last few years my body has really changed so I like to document everything. I am hoping I will meet a very smart understanding Dr one day that will put all the pieces together. Keep a smile on your face. You are on the right track,being a member of this website has really helped me.