Hello Everyone,
I need some questions answered in reguards to the lip biopsy. Are they all done by needles or incisions? I am scheduled for needle in one week. I did have new labs drawn. One year ago they were normal. I am so desperate for relief or help as too what is going on with me. My eyes are severely dry. I have the dry mouth and sinus's. I was just diagnosed with Sacroillitis. I was diagnosed with gastroparesis(mild) by gastric empty study. I have low blood pressure now..on florinef. I have the brain fog!! Elevated liver and pancreatic enzymes no known cause.\ Frustrating, and I still don't know why. I saw the rheumatologist who said these symptoms may not all be related to sjogrens and he said the meds are soo so even if it is sjogrens. Is there any hope if this is the diagnosis or do I just need to learn to cope. Desperate here need some advice please!!
Thanks so much,
Spartan1
Mine was done with a very small incision on the lower inside of my bottom lip. If it's done correctly, it shouldn't really hurt afterwards. I had a couple of stitches and couldn't even tell when they came out.
The dentist showed me the "samples" that were removed and being sent for pathology.
Good luck!
I can not give you advice about the lip biopsy because I never had one. I was finally Dx'd on blood work and symptoms.
"Where there is life and breath there is hope." to quote my favorite Doctor Who.
Until there is a cure, you will have to learn to manage. With luck you will be able to use the Medications that your doctors Rx. I am not able to use them so I have had to find alternative methods. I am still looking and I have an alternative theory of what causes this and many other auto immune diseases. Take a role in your own Rx and management.
Bring an advocate with you to every Dr appointment.
Hey Spartan,
I've had the lip biopsy twice- they did the incision, took out a small gland and tested it. the first time they didn't get a good sample, and so they did it again. the results were inconclusive. It showed reduced production of saliva, but not enough to give a diagnosis.
I was going through the same stress as you at the time, and just wanted an answer so badly- so this result was aggravating to say the least.
My Rheumy then sent me to get a Salivary Scintigraph- which was the test that FINALLY confirmed it as Sjogren's. That was after every other test possible. this test was my last shot at a diagnosis and I got it.
All I have to say is, if you get a negative result on this biopsy, don't give up. Keep pushing until you've had every test in the book, because a diagnosis helps in so many ways.
In the end though, you do have to learn to cope with your symptoms because there is no cure for SjS.
My ENT did my lip biopsy. He numbed the lip and proceeded to cut a chunk. Then he stitched it up. Later that night when the numbing went away, it hurt and ached for a couple of days. Then the pain is gone but the numbness is still there, 2 years later.
Like the others my lip biopsy they excised (cut) out a salivary gland from my bottom lip. I've not heard of doing the biopsy with a needle??? not sure how they would do this as the size of the salivary gland you can see with the naked eye, but I am not a doctor either. They numbed my lip before doing the biopsy and I had a couple stitches but it didn't really hurt. I don't have any numbness or problems since having it done. Good luck with yours. I'd be interested in how they do it with a needle.
Nancy
Thanks to everyone for their input and suggestions. I am so thankful to have people who understand. I am looking into the biopsy more. I am concerned that it is done right the first time. I will keep everyone posted once it is done.
Thanks again,
Spartan1
Spartan,
I am the same as Joe. Never needed to have the lip biopsy done, was diagnosed on blood work, CT scan of my parotids and general symptomology. I am both ANA positive as well as SSA and SSB positive. In addition to having primary and severe Sjs, I also have extraglandular complications, which include gastroparesis and sacroililitis as well as many other issues.
Wishing you good luck with your procedure and hope that it brings some answers soon.
Daisy
No BX here. I was Dx'd via blood work and my signs and symptoms. That's good enough for me! I don't know of anyone personally that has had it done.....hmmm...I don't know of anyone that HAS SjS, besides US! :D I'm pretty sure it's a secret online disease... :o
I had a lip biopsy by my ENT doc. Was not bad at all. Tested positive for pSS.
Daughter had lip biopsy before having kids...much swelling and soreness for several days. Negative for Sjogrens.
Then, last year she was sent to rheumy and bloodwork came back positive both SSA and SSB.
My bloodwork in 06 came back speckled with something...light case indicated rheumy said.
Thank goodness our two rheumies treat by symptoms not biopsy or blood work!
Spartan1 I read on your other post that you wanted to go to Johns Hopkins, well you can try and become part of there study, it's on going and they are still looking for people!
Call them and see if you can get in, if you need any info email me I will help you out! It is free and they will do your biopsy the right way, but you will have to be patient it takes time to get in. I got pushed up two months early because of cancellations. Good Luck.
Mary