Hi everyone,
Did anyone hear about, or have done a Parotid gland Ultrasound to diagnosis SJS ???? I heard the usual that they really have to know what they are doing, and that not just anybody can do it, and or read it.
I would guess just the big centers can read them right.
If anyone has any info on please let me know!!
Hope all are well
Thanks Mary ;D
That is a new one for me. I have never heard of that.
Me either,, do you have a link to that?
Never heard of it. I don't know what the deltoids would have to do with SjS. They are small shoulder muscles.
OMGoodness I am so sorry, talk about brain fog and farts!! I just can't multi task anymore!
Maybe I shouldn't write on the forum any more.. I was trying to get info on something I read about, and when I came back on and saw that I wrote the wrong name, well sorry!
I was trying to fill out forms to get into the SJS center at Johns Hopkins at the same time. Now I'm worried what I wrote on them papers!!! LMAO...
Mary
Every time I read this before I thought it said some thing else. They may be able to check the partoid gland for a stone with ultra sound.
I had a CT scan that picked up a small 'mass' in one parotid gland. I'd already been given a dx of SjS by a rheumy but the ENT doc didn't know that. When he told me there was a small mass and I told him I had SjS - he said "Oh well - that explains it".
It would probably show up on ultrasound too. I don't know.
Take care - Scottie :)
Did you originally say 'deltoid ultrasound' or is it me? Parotid, yes, deltoid, no.
Inga, the current issue of Moisture Seekers mentions parotid gland ultrasound in an article about how difficult it is to Dx SjS because of the different symptoms -- and degree of each -- that show up. It noted ultrasound is not a tool to Dx SjS currently but might be in the future.
I was wondering earlier if you were trying to say a deltoid biopsy. Actually, if you have a muscle biopsy they like to do it in the thigh. Oh well, we all understand cause we are all in the same boat. Irish ;D
Hi Mary,
Interesting question. I'm sure the medically-trained people here will have more info.
I was diagnosed in part because of a partoid gland ultrasound and CT. I began with symptoms in Feb. with eye infections and because of those was diagnosed with chronic dye eye. Also have dryness everywhere, lots of joint pain and fatigue, and my teeth started crumbling at an amazing rate.
My rhuematologist (the one who said I only have fibro. and some unspecified arthritis) ordered the ultrasound when I brought up how sore and swollen my jaw had been for mths. The ultrasound showed many areas of infection so much that the rhuemy wanted a CT.
The radiologist who read it wrote in the report that this type of infection was generally caused by Sjogren's or hiv. Since I do not have HIV my new PCP has diagnosed me based on all the classic symptoms I have and felt the ultrasound backed up his suspections.
I had a CT scan of the head in 2004 before I was diagnosed. It showed "diffuse bilateral parotid gland enlargement consistent with chronic parotid sialadenitis". Means my parotid glands were both enlarged. At that time I hadn't been diagnosed with Sjs and nobody even mentioned this finding. In 2008 when I was diagnosed I showed the rheumy the report and he confirmed it was Sjogren's based on that and my other symptoms. The only positive BW was ANA. Never had a gland ultrasound, though.
When I was at MAyo,, they did the radioactive dye uptake in the salivary glands,, it showed serevely reduced uptake,, report said seen in the context of Sjygrons syndrome,, now my salivary glands make some kind of white goo,
My ENT is good,, but for some reason he jsut refuses to do any scans to see whats going on,, even when I showed him the papers from mayo showing some serious problems in the sinuses with expansion of the sinus bones from a chronic thickening, of the mucos membranes,, man when they do a autopsy on me,, there going to wonder how i lasted so long,,
Actually, I DID have a muscle biopsy for muscle disease, in my bicep.
They now do the bicep over the quadricep muscle so you are not on crutches.
I was not questioning Parotid ultrasound, but I was questioning Deltoid Ultrasound, which was the original question. There would be no reason to go into the deltoid for SjS. The title for the thread was modified after I posted my response regarding the deltoid.
Yes to all who questioned the deltoid question, that was a mistake, as I said in my second post, sorry!!!
I will have to try and find the article I read that they can do this now.. but only the big centers, and it's very new! In fact someone here started me looking into it by saying they would never have a lip biopsy again, instead they would have there partoid glands ultrasound, it would be so much easier!
Feel Well All
Mary