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-   -   debating to have lip biopsy... need advice, story and labs inside (http://www.healthboards.com/boards/sj-grens-syndrome/927650-debating-have-lip-biopsy-need-advice-story-labs-inside.html)

pg600rr 11-15-2012 08:25 AM

debating to have lip biopsy... need advice, story and labs inside
 
Hello,
I am scheduled to have a Lip Biopsy done @ Tufts in Boston in a few weeks and I am trying to decide if its really needed.

Heres my background:
29 y/o male, started feeling ill w/ whole host of symptoms in Feb. 12' (but was having episodes of not feeling well starting in August 11'). Since Feb. have been in and out of hospitals in Boston, seen 28+ specialists in various areas, and prob had a $250k workup so far. My PCP is in the process of sending me to the Mayo clinic.

Not a whole lot has been found via the testing. Lyme tests have come back borderline, autonomic testing reveals "mild" POTS, early on blood work revealed 8% atypical lymphocyctes, and a skin biopsy revealed evidence of non-length dependent small fiber neuropathy (although a more recent one refuted this with contrary results), vit D has been a little low, and homocycteine has beenn high, Alk Phosphatase a little low, as is CK level. Other than that I have stacks of "normal" lab and testing results.

Because I have complained of dry mouth and dry eyes, and I have fatigue and GI issues as some of my major symptoms, my most recent Rhuem has explored the idea of Sjogrens. Here are the related Sjogrens tests I have had (all totally negative):

ANA (x5 in the past year, negative)
ANCA negative
ESR (usually 1-3, highest its been is 5)
CRP usually 0.1-0.3
DSDna negative
SM ab negative
SCL-70 ab negative
SS-A & SS-B (x3 in past year all negative)
RNP ab negative
RF ab <11 range 0-15

Regarding the dry eyes/mouth... I did have Lasik done 2 years ago and have had dry eyes since, hard to tell if they are worse or the same now because I dont recall how bad they were 3 years ago. My dry mouth seems to be worse at night while trying to sleep and in the a.m., I read this is common with Sjogrens, but I also can only breath through my mouth when I sleep (I have a deviated septum and for some reason my sinuses get completley blocked when I go to bed)....

giannat77 11-15-2012 01:33 PM

Re: debating to have lip biopsy...need advice, story and labs inside
 
i had the lip biopsy. Its not too painful. I had positive lab tests for sjorgens before that and i am not really sure why the doc wanted the bx, maybe for positive confirmation. The treatment didnt change after i had the procedure. Like most auto immune diseases, sometimes positive confirmation can take a long time. If the lip bx will help you obtain a dx then i would recommend having the test. Good luck and i am sorry that you have had so many problems with this.

pg600rr 11-16-2012 06:13 AM

Re: debating to have lip biopsy...need advice, story and labs inside
 
Hi thanks for the reply, I keep seeing mixed reviews on th biopsy, some say super painful and lasting numbness others say it was a breeze... on top of everything else I have going on not sure I could deal with permanent lip numbness!

I guess I am trying to decide whether to do it or not considering all the negative relevant labs I've had...my Rhuem said I just dont fit the bill and she has never had any Sjogrens patient not have atleast some sort of marker present (ANA or some sign of inflammation)

I think I'd like to exhaust allother potential Sjogrens tests prior to getting the biopsy, some I've read aboutbut havent had include:

Schirmer Test
Rose Bengal Score
Anti-m3 muscarinic Ab
Ultrasound of salivary glands
Saliva Flow Collection [sialometry] (look at amount and quality)
Stimulated secretion of SM/SL saliva

Any others that I've missed? Given the lack of any lab evidence or any signs of inflammation do you think it would be wise to exhaust these other tests prior to biopsy?

vdsuan 11-24-2012 04:04 PM

Re: debating to have lip biopsy... need advice, story and labs inside
 
I've had the lip biopsy done about 3 weeks ago. What hurt was the shots to numb the area. Afterwards, you won't feel a thing. The numbness goes away after an hour or so. Then I took 2 tylenols for the pain. The stitches will melt after a week. It is tolerable.

The doctor said it is not definitive but suggestive that I might have it. All my blood tests showed negative but I still have the dry mouth , throat and nose, and eyes. I have an appt on 11/26 to discuss. If it will answer your concerns about having Sjogrens or not, then I say go for it.

keecats 12-02-2012 11:40 AM

Re: debating to have lip biopsy... need advice, story and labs inside
 
I had the biopsy done about a month ago. I have most of the typical symptoms and while my ANA was negative, SSB came back slightly positive. Technically impossible, since SSB is a specific ANA, so the PA Rheumy decided the SSB was lab error. Luckily the regular Rheumy was willing to follow up with me and sure enough, the biopsy was positive.

I had absolutely no problems with the biopsy, other than a week of irritation and healing. No residual numbness and my lip feels exactly the same. I know some people have had negative experiences, but that's the case with any procedure, and those with problems will always be the loudest. I am sure, for the vast majority, it's a simple procedure that can answer a lot of questions.

I am really looking forward to finding the right medications to help control the disease. Good luck!


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