How do I...

[Shashi11962]

find a doctor who will not let a negative blood test put an end to a diagnosis? I don't want to traipse from doctor to doctor. Been there and done that. But I need a doctor who will pursue other tests and not give up. Can I call and ask them what they would do if the blood test was negative? This is all so frustrating!

[Chico]

Shashi,

More important than an official SjS diagnosis is alleviating your symptoms.   For example, if your eyes are very dry you may need to consult with an ophthalmologist whether or not you have Sjogrens. For dry mouth many OTC products work very well.

Would begin by consulting a sympathetic GP.  I too am sero-negative, but lip biop was positive. Not sure that info has made a bit of difference in either my treatment to date or how I feel today.

Chico

[Scottietottie]

Hi Shashi 

I agree with Chico. The most important thing is to get your symptoms treated. What has your doctor said about the symptoms? What have they tried to do to alleviate them?

Take care - Scottie 

[Abbasgirl]

With my experience, after all the different kinds I've seen and still are seeing, my primary doc has been more helpful. Not with blood tests or diagnosing. He helps treat my symptoms the best he can. He's aware that this can go around in circles for quite some time, so he's doing his best to help me stay sane while we wait. He knows this could be a long wait.

I just recently visited a University hospital rheumy and I'm impressed. This rheumy seemed much more thorough than the ones I've seen in my area. My doctor had advised me that many of his patients see the doctors there because we have so little to choose from in my area. I had to drive two hours but it was worth it. I learned a lot I didn't know before, she's worked with my primary doc, and is sending me to a hematologist that is located in the same hospital. I've got some hope in that, but keeping my feet on the ground. However, I rely heavily on my primary doctor until a diagnosis is found. Who knows...he may end up being the one to answer everything.

[lynnmarie219]

I also go to a University Medical Center and have to drive about 2 hours to get there, but its worth it to me! I started out by seeing a rheumy there who then referred me to a neuro in the same building. I also started seeing a GI there as well because I didn't care for the ones in my area.

Its nice because they all have access to the same records which are computerized.If one doc runs a test or does labs...any of them can see what was ordered and the results. Its help a lot with communication!

[cinmac]

Hi, I share your frustration and your concern.  The only tests that have ever been off with me were a liver profile and a haptoglobin.  ANA, sed rate etc all normal and my lip biopsy, while not normal was inconclusive.  In the US you have to meet "San Diego" numbers and I didn't.  My PCP was shocked that the tests were normal because I am so sick, producing no tears and very little saliva.  She says she has never seen someone with an auto immune disorder be so normal in bloodwork, but I am on steroids so she is wondering if that altered the blood work.  She is convinced it is auto immune cuz I have a very strong family history on both sides but I see a new rheaumie next month and I am afaid of what he will say.  I don't know what is worse, having a diagnosis or not having one.  At least when you have a diagnosis, even a scary one, you don't have the added stigma of being a hypochondriac or just plain crazy.

I don't know where you are, and I know in some parts of the world it is difficult to get or switch specialists, but if you see someone who dismisses you because of negative bloodwork I think you will continully have problems with that physician.  There has to be some sort of rapport for the patient doctor relationship to work.

I don't remember what post it was now, but someone on SW said they tested negative for years before getting a positive test so I'm guessing doctors have seen people like us before.

Anyway, you are not alone and I wish you the best with your doctor.

cinmac

[eyeamdry]

Sadly, this can be a long journey.  I do go along with the others on the University Hospital route.  I went to local rhemys and they said I didn't have anything wrong, even though I'd been treated for dry eyes for years.  I was very sick by this time.  They "saved money" and didn't do ALL of the tests.  I went back to my GP in tears and showed him my lip biopsy-which the local dufus called negative.  My GP, along with later rheumys said the lip biopsy was positive.  My GP sent me to a Univ Med Center and they diagnosed me right away.  Because..........tada........they did ALL the tests.  I was also positive just the couple of weeks before when the local guys did the bloodwork, they just didn't check it all. 

You can't set yourself up for "a positive diagnosis" because it may not be there.  My rheumy thinks I had the disease for 7 years and I think that's an educated guess.  Good luck, Lucy

[klw]

You need to go to a reuhmy
that will order any test they can and go outside the box (as she said to me) when
I went to my first appointment.
I live in Pittsburgh and go to the Magee Womens Hospital Lupus Center of Excellence.
It has been the first place that I have had any encouragement in battle.
I still haven't been diagnosed, but she is sending me to a Opthamologist and
will continue all avenues.
Good Luck,
Karen
Anyone from Pittsburgh out there?