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Posts: 107
Joined: Feb 2007

Anyone heard about this or have been diagnosed with it?

I recently got a phone call from my specialist and I tested high on the antibodies for it sooo I get to see a Rheumotologist dr now too at the end of this month. I did a little seaching on the web about it and to be honest, I don't see where my symptoms match up with SJS ones. But with any medical conditions, symptoms are different for each individual.

I am just curious if anyone is dealing with SJS too? Thanks!

hodgkoid2003's picture
Posts: 94
Joined: Apr 2009

I'm not sure about this. From what I've read, there really are no blood tests to determine any kind of salivary gland malfunction. Not saying it's not possible. But seems odd. I have heard before of people with "dry mouth", though never knew there could be a name attached to it.

Saliva is important as it helps to protect your teeth. I don't know if you checked out the Merck Manual web page (definitely no sub for a doctor, but can at least start a conversation). Here is the page on Sjogrens:


I'd be curious how this turns out.

Posts: 107
Joined: Feb 2007

Well it is official that I have Sjogrens. It is an autoimmine dusease that attacks the moisture producing glands of the body. It can in severe cases attack the joints and muscles too.

I was told it is progressive but the rate of progression and symptoms patients experience are all individualized. Seems we are each "special". I am still getting monitored alot. So far for me it is just the blood#s, teeth cavity problems, dry eyes and some fatigue. Don't know what to expect but I beleve most everyone on this website is in the same dilemma. You just go day by day.

Posts: 1
Joined: Mar 2008

Hi-I was diagnosed w/sjogrens when I was 20-jeez, that's 33 years ago! So, yes, I know a little something about SS!! When I was dx it was described as an autoimmune disorder affecting postmenopausal women. Anyway, I started with inflammed parotid glands-they would actually get infected, so I needed prednisone and an antibiotic. It took awhile before my eyes got involved. I now have "profoundly" dry eyes; I really love Lacrisert-it has been a lifesaver since they discovered it in 1983. And, the rad for Hodgkins (last year) surely did not help my dry mouth--oh Lordy----it's a desert in there! Biotene to the rescue. Yes, we all put one foot in front of the other each day, and keep moving forward. There are a bunch of treatments-if you have any questions, I probably can answer them. I have had my tear ducts cauterized (you haven't lived until someone puts hot needles in your eyes! ;) )I am kidding-you don't feel a thing, but it's pretty freaky!! BUT-it has helped immensely! And, nobody even really knows I have ss-despite cancer, and ss--I just finished nursing school last week!! Ta-da!! I have to pass the NCLEX, and get a job--but I am now a graduate nurse, almost a registered nurse!!

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