Author Topic: Negative Lip Biopsy  (Read 2094 times)

Wynter

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Negative Lip Biopsy
« on: July 08, 2008, 05:03:50 PM »
I received the results of my lip biopsy today, and as I suspected it was negative. My blood work done in April was also negative. So, here I am with many symtoms and no positive tests. I saw a rheumy in May, and he pretty much said without positive lip biopsy he didn't want to see me again.

I discussed the situation with the ENT and he suggested seeing another rheumy. Luckily, my primary care is willing to help by sending me to another rheumy or starting me on Plaqeniel. My questions to the forum are:

1. What should I do now?
2. Should I start Plaqeniel from the GP? I am a little hesistant without first seeing a rheumy.

Any advice is greatly appreciated.


eyeamdry

  • Guest
Re: Negative Lip Biopsy
« Reply #1 on: July 08, 2008, 06:02:03 PM »
When I started out with all my *struff* two years ago, a rheumatologist gave me a negative report from my lip biopsy also.  My prior bloodwork had also been negative.  Unknown to me, this time the rheums skipped some of the bloodwork to "save money."  I showed the lip biopsy report to my GP, my ophth, the oral surgeon who did the surgery (he'd already told me I was positive).  The other docs disagreed with the negative report.  My GP sent me off to U of M Hospital.  I'd already had the lip biopsy and gave them a sample to run in their lab, plus they took all new bloodwork.  Bingo, I was positive!

I was also very sick and was not going to do without medical care any longer.  I didn't care if I had to lay in the dr's office floor until I was seen.  I didn't care which doc prescribed meds for me.  I never went back to THAT rheum, so they didn't do crap for me.  My GP put me on the right dose of methotrexate, prednisone and folic acid before I could get in to see another rheumy.  A few months later Plaquenil was added. 

If you really feel sick, get started on meds.  If you feel you can take more time and look around for a doc you like, then do that.  (This might be a good time for your GP to step up and see what he knows about Sjogrens.)  Mine knew what to do, or at least he looked it up when I was in there.  Good luck.  Lucy

JannaLee

  • Guest
Re: Negative Lip Biopsy
« Reply #2 on: July 08, 2008, 09:46:42 PM »
I agree with Lucy.

Pooh

  • Guest
Re: Negative Lip Biopsy
« Reply #3 on: July 08, 2008, 10:55:39 PM »
I too am with Lucy on this one.  Hang in there.

Hugs, Pooh