Looking for any info on Sjogren's
 

Just wondering if there is any group for Sjogren's syndrome on this site. I can't seem to find any info on it. I think I might be having some symptoms.......TIA

Looking for any info on Sjogren's
 

Not sure if there is any group here on Sjogren's. I was dx in 1998 with primary Sjogren's syndrome. *edit* lots of information on this complicated, little understood disease. Post any other questions you may have.

I am going to see my doctor in February. Will have more questions.

I believe Nide44 posted once about a special Sjogren's division at John Hopkins.

Here is a link to that clinic:
http://www.hopkinssjogrens.org/

Although there is a few of us with Sjogren's here, I don't think there's enough for a board/group.

I'd be happy to answer any questions you have.

I am also a patient at the Sjogren's Center at Hopkins. Look over the different parts of the link MrsD attached carefully. There are very specific requirements just to get accepted to make an appt there...and the waiting list can be long.

Here's another link with more detailed info about the process to get in and what specialties are part of the Center.

http://www.hopkinsmedicine.org/rheum...ns-center.html

Have you had the initial testing SSA & SSB? What about a lip biopsy?

No testing done, I will confer with my doctor next month. Thanks everyone. :grouphug:

I can't recall the fourm but there is one for sjogrens if you google it. I think sjogrens world. I had a lot of symptoms with dry eye,mouth,pain etc so I went on there for awhile. I did get tested and don't have it though. I know a lady on here that used to post has Sjogrens and PN though. I hope you feel better and get some answers

Rosie.... if you search "sjogren's" on the search function which appears at the top right of the first page on our PN regular forum here, you find 297 posts that mention or discuss it.

This is one:
http://neurotalk.psychcentral.com/sh...ht=Sjogren%27s

I cannot give you the complete search, because for some reason the search doesn't carry over well as a link in a post to others.

But we have lots of information here and presently 3 members including en bloc and cyclelops who are very experienced with testing, and living with it. Some older members in the past, who are not current, also and that is why doing a search is helpful to bring up those older threads.