Cancelled my iip biopsy...Opinions?

[skygirl]

Hi.
last month my rheumy doc said she could indicate to a good ENT..But I decided to "think about it"..

I also go in the same clinic every six months see a dermatologist to check a skin problem that is autoimune related.and  got talkign to him about it and he got me the app for a lip biopsy there with another doctor. But then, ooooonly today I decided to check the name of the doc on this clinic websites...and is a resident doc..
The app is tomorrow morning, but I just called and canceled..I never canceled an app 15 hours before the app..I should have called a few days ago.. I hope the insurance doesn't slap me with some canceling fee.

So, I will probably ask the rheumy to indicate a good ENT...a experienced one...I'm really scared about this biopsy

what do you guys think of my move?

[voiceteacher]

You were correct to cancel.  As I've read all over this site, ONLY USE A DR THAT IS VERY EXPERIENCED IN LIP BIOPSIES.  There are too many horror stories out there from drs that were not experienced enough.  You made a good decision.  I hope you find a qualified dr soon - - good luck.

Voiceteacher

[eyeamdry]

Hi skygirl-
I had a lip biopsy and would never have another.  I have a lower lip that is still numb after almost 3 years.  What will you gain IF you get the biopsy?
What will you lose if you don't do the biopsy?  I don't think it matters who does the surgery, it's all in how our body heals and no doc can tell us ahead of time. 
Many others on here have been left with numb lips.  I was diagnosed with a positive blood test, so my biopsy was all for naught.  The first rheum I went to said the lip biopsy was negative, when my 6 other docs disagreed, so the test is subjective.  One doc might call it positive and another say it's negative.

My 2 cents.  Lucy

[skygirl]

HI,
what do I lose by not doing it = they won't give me meds not even salagen.
all my blood work has been negative.  overall health is good they say.

I only have the dry eye and mouth..It is mild, since my tongue never got stuck to the mouth roof. 

So what I could do instead of getting lip biopsy is wait....Maybe if I start having worrisome symptons like
say bodyache, or who weird stuff, who knows...maybe it would show in the bloodwork. 

I haven't noticed any other problems.  all other annoyances I have like indoor allergy and post nasal drip,
dermatitis are not bad. I also got a flair of morphea (skin scleroderma related), a few years ago, meaning got
my bruised skin for life, so the damage is done. After that episode is when I learned that I should try get diagnoses quickly as possible,
to prevent further damage. Should I have been smarter got a quick diagnose at the time, maybe they would have given me
Methotexatre, and i wouldn't have bruises all over my body today,...but who knows that Methotexatre is so toxic..

So I don't know...what to think. I will stop worrying about Sjoegrens for a while.

My next step is to find a new ophalmologist....I need restasis, plugs and anything they can give me.

Monica

[eyeamdry]

Skygirl, even if you have Sjogrens, there isn't anything more you can do for your eyes than you can now.  Ask your eye doc to try you on Restasis.  Find a doctor who treats dry eyed patients. 

As for your doc not giving you meds because you are not "positively" SJS, I guess ya' got me on that one.  It sounds like Salagen or Exovac is the only thing you need if you do not have muscle problems, joint problems etc.  You might try doing a "search" on this board for those meds.  I have a prescription for each, but can't stand the side effects.  Others swear by them though.  Lucy

[voiceteacher]

HI - - as for salagen and evoxac I have tried them both and they do produce saliva but I really don't like the side effects so I just don't take them unless I'm having a really bad flare.  However, I read on here about halls refresh - - not regular halls but the refresh - - they really do help!!!  I was shocked.  After I eat one, I still produce saliva for awhile -- not really sure how that works but it's certainly worth a try for you.

Voiceteacher