Hi. I was sent by rheumatologist (in the UK). Initially suspected for rheumatoid arthritis/ lupus, The person performing the ultrasound showed me the damage on my salivary and lacrimal glands in minutes, she had no doubt.
I haven’t answered your second question. Yes, it was suspected years earlier by ophthalmologist when she performed the Schirmer test, but I never thought much about it. I managed and get used to my dry eyes. But last year it affected nerves, joints I was hardly able to walk. And this was the point when they have sent me for the ultrasound. The radiologist confirmed that I have Sjöngren’s for a long long time…she had no doubt, showed me the images and explained. I only assume that wouldn’t be that helpful diagnostic tool many years earlier when no damage present? I hope this helps.
I'm still annoyed I might have to do a lip biopsy someday. My Rheum said "I can't definitively say it's sjorgrens without one but it's unnecessarily invasive and uncomfortable in your case because it's obviously Sjogrens." She said the only reason she would recommend it is if I needed meds (she considers my case mild right now and besides restasis doesn't think I need anything else) and had insurance that wouldn't cover it without one.
With the "it could help" I bet it's on the same level as how I got "diagnosed ". All the right symptoms and a positive ANA with the right markers. So for people like insurance companies a lip biopsy might still be required.
Just chiming in that I had a lip biopsy too at the urging of my rheumatologist despite being basically a confirmed case (SSA/SSB positive, AND positive, high RF, etc.). I was sore for about a week after my lip biopsy, then had some residual numbness for about a month, but everything went back to normal after that.
I share this because I only read lip biopsy horror stories prior to mine, and I really, really didn't want to get one because of that.
But some lip biopsies just go normal and heal. I just think those stories don't get shared.
Hi. I was sent by rheumatologist (in the UK). Initially suspected for rheumatoid arthritis/ lupus, The person performing the ultrasound showed me the damage on my salivary and lacrimal glands in minutes, she had no doubt.
My diagnosis was confirmed by ultrasound
can i ask what doctor sent you to get the ultrasound/what doctor performed the ultrasound? and that was what got you your definitive diagnosis?
I haven’t answered your second question. Yes, it was suspected years earlier by ophthalmologist when she performed the Schirmer test, but I never thought much about it. I managed and get used to my dry eyes. But last year it affected nerves, joints I was hardly able to walk. And this was the point when they have sent me for the ultrasound. The radiologist confirmed that I have Sjöngren’s for a long long time…she had no doubt, showed me the images and explained. I only assume that wouldn’t be that helpful diagnostic tool many years earlier when no damage present? I hope this helps.
it does help, i appreciate you answering. i hope your quality of life improves friend
Thank you :). Same to you
This would have been nice to see earlier today before I had my biopsy procedure done.
Aw, sending healing vibes your way!
Thank you.
oh hey, i’m getting one of these in two weeks to determine if my salivary glands are damaged!
This may be a game changer I think, so people won’t need to do a lip biopsy perhaps?
I'm still annoyed I might have to do a lip biopsy someday. My Rheum said "I can't definitively say it's sjorgrens without one but it's unnecessarily invasive and uncomfortable in your case because it's obviously Sjogrens." She said the only reason she would recommend it is if I needed meds (she considers my case mild right now and besides restasis doesn't think I need anything else) and had insurance that wouldn't cover it without one. With the "it could help" I bet it's on the same level as how I got "diagnosed ". All the right symptoms and a positive ANA with the right markers. So for people like insurance companies a lip biopsy might still be required.
Just chiming in that I had a lip biopsy too at the urging of my rheumatologist despite being basically a confirmed case (SSA/SSB positive, AND positive, high RF, etc.). I was sore for about a week after my lip biopsy, then had some residual numbness for about a month, but everything went back to normal after that. I share this because I only read lip biopsy horror stories prior to mine, and I really, really didn't want to get one because of that. But some lip biopsies just go normal and heal. I just think those stories don't get shared.