Author Topic: lip biopsy  (Read 2974 times)

babycakes

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lip biopsy
« on: June 24, 2008, 09:47:40 AM »
hello all

im a fairly new member to this forum and have found the advice given great, i have been diagnosed with sjogrens (well its likely) but i had a question.  I have had a positive high ana test and a positive ssa blood test.  the rheumie said that backed up by my symptoms it is likely i have sjogrens and UCTD?  He has arranged to do a lip biopsy but i wondered if this was really necessary given my blood results.  I saw the ENT dr and he took an Xray of my face and checked my mouth and said there was some saliva being produced but it was reduced.  My rheumy has now left and another permanent one (who is apparantly good) will see me in a month but i have my lip biopsy before then?  Also, ive just started plaq (for 3 wks) and have to have a blood test a month after starting it and then in another month.  Just wondered if anyone knew why this would be?

Another big symptom at the mo is migrating body pain.  It moves all around my body and i can only describe it has someone pushing a pain button briefly???  What could this be?

any advice would be appreciated.  annie

Pooh

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Re: lip biopsy
« Reply #1 on: June 24, 2008, 10:06:45 AM »
Hi Annie,
I'm not a medical person so I can only give you my own personal opinion.  If it were me I would question the need for the lip biopsy with the already positive blood work.  To me it seems like a waste of time and your added pain and discomfort. 

The floating pains seem to be a part of everyday life for me.  Don't know if it's related to the Sjs or not.  But my rheumy told me it's the Osteoarthritis and neuropathy that I have. 

I'm sure one our medical educated members will be able to tell you more. 

Good Luck,

Pooh

Linda196

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Re: lip biopsy
« Reply #2 on: June 24, 2008, 12:23:01 PM »
Hi Annie,

I'm not sure why, with positive autoantibodies, your rheumy would insist on a lip biopsy. The most recent criteria for diagnosis says histopathologic feature (positive lip biopsy) or presence of autoantibodies , both aren't required.
This information comes from http://www.postgradmed.com/issues/2004/09_04/derk_tab4.shtml and if you like, you could print it out to show the doc, if you choose to question the need of a biopsy.

The blood tests while you take Plaquenil are a necessary precaution to monitor liver function. Even after taking it for more than 4 years, I still have the bloods done every 6 weeks.

The migrating "pain button" phenomenon is one I'm familiar with too, but never got a satisfactory explanation for. What I find strange is, in my case, although it always feels like a quick stab, it's not always the same type of tissue...sometimes it's joint pain, other times muscle, or tendon, skin, deep tissue, or nerve...no rhyme nor reason!
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Skylar

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Re: lip biopsy
« Reply #3 on: June 24, 2008, 02:22:32 PM »
Hi Annie, I would question your new rheumy as to the need for a lip biopsy. I didn't need one for a diagnosis.

Skylar

Patze

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Re: lip biopsy
« Reply #4 on: June 24, 2008, 07:34:11 PM »
Hi Anne,

I'm with the others (I'm not a medical person either - past or present), I'm just curious as to why he thinks you need a biopsy when you've already got positive blood work?

Please be careful with a lip biopsy, I realize a lot of people who have had them done on this board, had little to no real problem with theirs.  I was not so lucky as the ENT that did mine was so busy trying to speed through it as fast as he could - well, I paid the price for that.  I now have a permanent numb area around the the incision site (from the base of the lip to the edge of the outer lip). 

Oh, the migrating pain, wow, I never knew I could hurt so bad and I didn't know what part of my body will hurt next from one day to another - frustrating.  I found that Plaquenil has helped the pain level so it doesn't take my breath away anymore; I still hurt, but I'm not walking like I'm a hundred and ten :), well mostly! :)  It took the Plaquenil about six months to really work for me, so hang in there and hopefully the Plaquenil will kick in really soon for you.

Please keep us updated and take care now -

Patze
« Last Edit: June 24, 2008, 07:39:17 PM by Patze »
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irish

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Re: lip biopsy
« Reply #5 on: June 24, 2008, 08:07:55 PM »
Anne, I have had the lip biopsy but only because my rheumy wanted it done because I had no positive blood work. I now have allllll the positive blood work. If it was me and I had the positive blood work I would skip the lip biopsy as it is not absolutely needed. It is considered the gold standard for diagnosis, but you have all these other positive tests plus the decrease in saliva---sounds like a positive to me---especially with the plaquenil ordered also.

About the migrating pains---I have not got an answer for you either, but I really think it is part of the autoimmune picture as I have what I call the knife stabbing pains. They do move around and sometimes they literally take my breath away. Thankfully they do not last very long so it is tolerable. Welcome to our site and hope you continue to find good info here. Irish ;D

babycakes

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Re: lip biopsy
« Reply #6 on: June 25, 2008, 01:17:25 AM »
hi pooh, linda, skylar, patze and irish

thanks for so much for the speedy advice and opinions, i shall ask my new rhemie why i need the lip biopsy although he said i prob do have sjogrens.  Id rather avoid any proceedure unless absolutely necessary.
Its interesting to hear that others of you have this migrating body pain and yes sometimes it feels like the muscle, bone or nerve pain mentioned, not only one type.  Its not agony just takes me by suprise and seems worse at certain times and moves around all over the body.

thanks again for the help


annie