LIP BIOPSY

[lesleyjoy]

Hi Calli, very well put 

Cheers, Lesley (NZ)

[eyeamdry]

Calli- my eyes were first to go dry.  They started with Lasik surgery.  I was diagnosed with Sjogrens 7 years after the Lasik.  I think my mouth started to become dry about a year or so before I was diagnosed.  My lips started becoming numb even before I noticed mouth dryness.

I believe the docors do not know what they want, all seem to expect something different from the test.  I was dreadfully sick just prior to the lip biopsy and the first rheum did not take ALL THE RIGHT BLOOD TESTS so my tests showed nothing.  They insisted on a lip biopsy which they said was "normal" too.  Within 2 weeks of that, I had gone to my University of MI hospital and they had positive blood tests because they knew which ones to take.....and said the very same lip biopsy report was indicative of Sjogrens.  So, my lip biopsy was done for no reason.  I'd like for one of them to have their lip chopped on.  I could actually feel the doc snipping at the tissue with his little scissors.  Lucy

[wednesday mc haggis]

im in same position here, ive now come back as seronegative, but i have all the symptoms are some, so im awaiting rheumy and hoping against hope they ll say SJS and not make me go throught he lip biopsy , just have to await that  outcome,  id appreciate you letting us know how its all going for you

T x

[allium]

I saw another rheum yesterday (waited 3 months because they cancelled my 1st appt. the day before).

The parade of indifferent and ignorant people I keep seeing who call themselves medical professionals.

No one had my med records (either never sent or they lost them 2 months ago) so I had to recite from scratch everything again.  This doctor said, well, most of the bloodwork is negative, so you probably don't have Sjogren's, we can only do a lip or brain biopsy to find out.  I asked who was someone good that she sent people to for that.

The response was she sent them to this ENT, and she didn't know anything about him, because she was new to the area.  Might be good or not, didn't know.  I said that I understood that the success of lip biopsies are often dependant on who interprets them , and many people are left with permanent damage such as a numb lip.

Her response was : "You say your face is already numb, so it won't matter much, will it?"

[ruby52]

Falls under the heading Run Do Not Walk To The Nearest Exit!
                                                    Ruby

[wednesday mc haggis]

allium

awful it is ,feel it for you, being sent to rheumy now myself, and will have to wait likely on the you ll need a lip biopsy crap as well, ah well it will bne what it is

T x

[lesleyjoy]

Hi allium, some Dr's get so arrogant when you ask them questions and they don't know the answers. Some don't like it when you've researched a topic and know as much or more than they do about it!

Your specialists comments were totally inappropriate and ignorant and should be reported. I can't believe the nerve of the woman...she needs telling a thing or two  I'd certainly go to another Dr and refrain from having this procedure!

Take care Lesley (NZ)

[allium]

Thanks everyone, sorry.   Didn't want to make this thread about me.

Just a confounding situation; she seemed to have some Sjogren's knowledge, but was cold and blase toward me.  If you might know that this procedure is potentially damaging, why WOULDN'T you make an effort to direct your patients to the best care possible.   Otherwise, what is the point if it's not done correctly and hurts someone.  You still have no results that are helpful.

And you are right, Lesley, very inappropriate and cruel thing to say.

There are a shortage of Rheums in this area, and the good ones won't see you unless you have three heads with snakes in your brain(s).  You are left with the newbies and the bottom of the barrel to struggle with. But that means they get away with it.  I could call myself a Rheumatologist and have 100 patients tommorrow.

Just one more note; my dentist is also my longtime neighbor and has tried to help me.  He has suggested an oral surgeon that he trusts, but that doesn't mean that they know squat about lip biopsies.  Ask you dentist, too if you can.

I appreciate all of your support.

Sheila

[Patze]

Hi Sheila,

Like Ruby said, did you run like heck out of there?  Dang, shortage or not, there is no way a doctor should say something like that!  What part of the country are you in if you don't mind my asking?


Patze

[allium]

Hi Patze, how are you/

It was at the very end of the visit, after me telling her everything that I had filled out on the intake forms (hadn't read them either).  Her contribution of her expertise was that since I had no pos. bloodwork, the only way to tell was with a lip biospy.  Hence my comments, then hers.

She had also said that she thought it was all in my brain perhaps..  not sure if she meant my "head", as such (not a native of this country).

I am in the great wilderness of western NY state, near Rochester.  Which has a large teaching hospital that seems to want hip replacemant, lasik surgery, and curable cancer patients, not people with strange conditions they have to work at to help.

I am so willing to go elsewhere for help, but don't know where.

[Patze]

Hi Sheila,

Have you by chance posted on the Looking for a Doctor section?  Please post if you wish, and hopefully a member will be able to respond with a name of a different doctor.


Patze

[lesleyjoy]

Hi there again allium, an oral surgeon sound like the person to ask, after all they deal with mouth issues all the time.
Last August my youngest daughter Briar 21, got hit in the mouth with a hockey stick which chipped her 2 top teeth, pushed her 2 lower ones back and split her inner bottom lip down to the bone   The oral surgeon was wonderful...she had 14 stitches in her inner lower lip, he realigned the bottom 2 teeth and splinted them and fixed up the 2 upper front teeth and splinted them as well. As careful as he was, Briar still has a largish numb patch on her inner lip (I guess that's reasonable after an accident like that and with 14 stitches). This guy knew his stuff and he knew all about the nerves placement etc and answered all our questions, showed up pictures and drew diagrams etc  

My daughter plays hockey at a competitive level and she's also did a coaching major from University. She works at a Hockey Stadium. Her new mouth guard is being specially made by the oral surgeon as well. Anyway this is off-track, but you see what I mean about a good Oral Surgeon  

Good Luck, Lesley (NZ)

[allium]

Patze, I will try to post about a rheum or neuro within a doable distance.  There might be some lurkers out there on this board that are situated near me.

Lesleyjoy, thank you for sharing daughter's experience; sounds like she's quite an athlete!

Anyway, I don't know if all this stuff about me has helped Shelly with her question, but perhaps it shows there are varied results with this procedure.

Ask, ask, ask around.

I am waiting on this one (and NOT returning to this abusive boob, either).

[Chana M]

Now I'm confused ... Allium, you say that 'good' rheumies in your area will only see you if you have 'three heads with snakes in your brain(s)'.  So what's the problem?  Surely you're the perfect fit?!

Chana xxx

[allium]

    
       

(artist's rendition of what Allium's heads may appear as)