Lip Biopsy Results

[floridagirl]

I got my results today from the ENT and a copy of the report.  Focus Score = 0; negative..  I see the Rheumy next week.   Not sure where we go from here?

[klw]

Dearest Friend,
I know how your life is because before I got sick everyone cried on my shoulder. I was always
giving all my time to others and would wear myself out. I call any of them and they are not listening
to me and just go on about their toxic lives. They most all say how lucky I am to have this or that and
I'm just screaming inside ( I was always the peace maker of the family), please just listen to me for
once. This is so common for us listeners.
God Bless you and you are in prayers!
karen

[jonnell]

What does that score mean.  You are also in my thoughts and prayers.   Jonnell and Jenna

[floridagirl]

It is just a negative test result.  They found no inflammation in the saliva glands.

[wednesday mc haggis]

florida

im wishing right now i knew more and could offer some advice

so sorry this ddint end your need for diagnosis, hopefully someone will know more and can offer some advice, i know ppl here have been told their biopsy was nagative, then got it reread and it wasnt :-s

got mines on friday, hoping it shows what i already know and it puts an end to a long journey, so sorry its not been that way for you, thoughts with you

T x

[Patze]

Hi Floridagirl,

Ouch, that is tough!  I'm sorry that you've had to go through a biopsy and still not have any definitive answers.  I know how you feel, my biopsy report read something in line of negative with some infiltration (what the heck does that mean anyway?), something like that - can't seem to find that darn thing!

Hopefully you might have a rheumy that will treat your symptoms without the positive biopsy.  I'll keep the digits crossed for you.

Please do let us know what the rheumy says.

Hang in there and take care -

Patze

[floridagirl]

Patze....it is frustrating because the doctor had mentioned to me months ago that even with the SS-A and SS-B coming back inconclusive he asked me to do a lip biopsy anyway. I also had a mildly elevated ANA.  I agreed to it and truthfully I had no problems with it.  In fact, it has been a week already and it is a non-issue and never was a problem for me.  The doctor said why they like a lip biopsy is that they are the gold standard for diagnosing Sjogrens.  I went through about 10 years back when I was 19 with the flu like symptoms, muscle spasms, etc. and finally was diagnosed with fibromyalgia.  I have disagreed with doctors in the past that they said there was no inflammation with fibromyalgia.  I know there is inflammation because I have experienced more than I would like to admit.  When my shoulders and neck are warm to the touch, I call that inflammation.  I think anytime "Syndrome" is part of a disease, it is treated like a garbage can disease and somewhat in the head.  Enough of whining on my part but all of this is so frustrating.  You get all these blood tests and they say even if they are negative or inconclusive they might still be positive.  You would think that as long as all these diseases have existed like Lupus Sjogrens, Fibromyalgia, RA, etc. that they would know more.  I think they also know more about cancer but cancer is a disease that is a money maker. Just my opinion but so many people are feeling so sick and they know nothing and look and you and say "I have never heard of that before".  My doctor looked at me when this whole thing started and me saying I had salty lips.  He said he never heard of that either but if he googled salty lips he would find thousands of frustrated people with the same darn problems for years and years.  Okay I vented and feel better....thanks for listening...

[Patze]

Hi floridagirl,

In a way you are lucky, you've had some blood tests that were mildly elevated, with the exception of the ESR & CRP, mine have been right around the middle of the road - and I can understand your frustration with it.  Like you, I know when a part of me is swollen/inflammed; I hate to be talked down to, gets my ire up every time.

Now if they could develop a test to check my blood for any immunity to SJS, then I'd know that I have it for sure.  With the exception of whooping cough (with pneumonia) as a child, I had no other childhood diseases and having siblings and lots of other kids roaming around (around the dinosaur age), I was exposed to a ton of stuff and never got anything other than the common cold's and flu's.

Rant away, I know I'm guilty of that a number of times myself! 

Take care -

Patze