I received my SJO blood test results from IMMCO Diagnostics. Their comment was that the positivity of these antibodies, (in addition to the dry mouth/eyes) suggests that I am likely to have Sjogren's syndrome. These tests were positive:
Anti-nuclear antibody (HEp-2) -- 1:80
Anti Nuclear Antibody pattern -- Nucleolar
Carbonic Anhydrase VI IgM -- 42.8 (the reference range for positive finding is over 20 EU/ml).
Now my Doctor wants me to have a lip biopsy. I am not sure what to do; I have read mixed reviews regarding the outcome of lip biopsies. Wanted to get your thoughts. Also, my doctor has prescribed NeutraSal for dry mouth. Has anyone used this product. Thanks for listening and my best to all.
Hi Jacquied -- So HAPPY you told us about these results with the new SJO test! My opinion -- NOPE, this is enough -- Don't put yourself through a lip biopsy. Some people went through it very well but many others had horrible times with it that lasted more than a month and even had long-term numbness. So I wouldn't bother. This is enough of a diagnosis. I wouldn't put yourself through the biopsy. Unecessary, in my book.
Can I also ask how you found the doctor that would run this test for you -- the SJO test?
Hi. Thanks for the input; I appreciate it. My Rheumatolgist referred me to the Opthalmic Consultants of Long Island (OCLI). As of 12/2013, it was the first opthalmology practice on Long Island to test for Sjogren's Syndrome. They draw the blood from the vein in the arm, not the finger-prick. They have several locations in Long Island, No. 1-866-SEE OCLI (l-866-733-6254) or visit www.OCLI.net. Thanks again.
DLT88 said:
Hi Jacquied -- So HAPPY you told us about these results with the new SJO test! My opinion -- NOPE, this is enough -- Don't put yourself through a lip biopsy. Some people went through it very well but many others had horrible times with it that lasted more than a month and even had long-term numbness. So I wouldn't bother. This is enough of a diagnosis. I wouldn't put yourself through the biopsy. Unecessary, in my book.
Can I also ask how you found the doctor that would run this test for you -- the SJO test?
Hi. Thanks for the input; I appreciate it. My Rheumatolgist referred me to the Opthalmic Consultants of Long Island (OCLI). As of 12/2013, it was the first opthalmology practice on Long Island to test for Sjogren's Syndrome. They draw the blood from the vein in the arm, not the finger-prick. They have several locations in Long Island, No. 1-866-SEE OCLI (l-866-733-6254) or visit www.OCLI.net. Thanks again.
DLT88 said:
Hi Jacquied -- So HAPPY you told us about these results with the new SJO test! My opinion -- NOPE, this is enough -- Don't put yourself through a lip biopsy. Some people went through it very well but many others had horrible times with it that lasted more than a month and even had long-term numbness. So I wouldn't bother. This is enough of a diagnosis. I wouldn't put yourself through the biopsy. Unecessary, in my book.
Can I also ask how you found the doctor that would run this test for you -- the SJO test?
I got the Sjo test through my eye doc also. I'm on Long Island also. Sounds to me like the doc wants to use old technology to confirm the new. I wouldn't do it either. I may ask why there is a need to undergo another medical procedure.
My Sjogren was found by blood test of the arm only I use a mouth wash from walmart for my dry mouth!! I pray dr. Find medicine that works best for u . I’ve had lots of medicines so. Far I’ve had allergic reaction to all because I’m allergic to sulfur, sulfate,
Thanks for the words of wisdom. Will look into the need for additional procedure. Stay Well.
EnjoyLife said:
I got the Sjo test through my eye doc also. I'm on Long Island also. Sounds to me like the doc wants to use old technology to confirm the new. I wouldn't do it either. I may ask why there is a need to undergo another medical procedure.
Thanks Sabra. I know this Sjogren's community has been fighting this disease for so long. It is great to have a site such as this so we can share our concerns and comfort one another. My best to you.
sabra said:
You have been thru so much; I think you have sjogren's do you need to go thru a lip biopsy for further confirmation; hey, when is enough enough.
Wendy, I am so sorry that you are having trouble with finding the right medication. I hope you get an answer very soon. Thanks for your thoughts.. Stay Well.
Wendy said:
My Sjogren was found by blood test of the arm only I use a mouth wash from walmart for my dry mouth!! I pray dr. Find medicine that works best for u . I've had lots of medicines so. Far I've had allergic reaction to all because I'm allergic to sulfur, sulfate,
Thanks for replying. I hope your area starts performing SJO testing soon; it is supposed to be very helpful in diagnosing Sjorgren's Syndrome at a early stage. Good Luck.
bigmama said:
I am in the Nashville, TN area. I was told that the Nicox's Sjo panel is so new that even Vanderbilt Hospital doesn't do it yet.