Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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/ Sjogren's Syndrome Support Group

sjogren specialist

mseaton
mseaton
I have researched and found that sjogrens affects so much more of our bodies and systems than I ever realised. I really want to find a DOCTOR that specializes in sjogrens. I realise I need to see different doctors for the different systems but I get told no this problem isn't related to sjogren only to later find out yes it is! I'm so overwhelmed!
deleted_user
deleted_user
i too have many symptoms which i was told could or could not be related to sjogens. I personally have had; cervical cancer in 2001, ten in 2010 i had a parathyroid tumor removed, then a fews months later had my gallbladder removed, i still suffer from acute right pain (under my rib area), also have bad headaches. anyone else have any of this? thanks for listening..cherokeesister:)
deleted_user
deleted_user
It IS frustrating!! I also had cervical cancer and have daily headaches (never have 5 minutes without one!!). I hate it when I read things online that say a lot of my symptoms are connected to Sjogrens and then the Dr's (primary and Rhuematologist) say it ISN'T related.. What to do?? Usually I just say nothing and treat myself!!
flowerlady58
flowerlady58
I feel really blessed I have a really good Rhemy. I think we do have to do the research ourselves and thank God for this site to help each other. I had my gallbladder removed a couple of years ago. Never gave me a bit of trouble and then Bam! out it goes. about 4-5 mths ago was told I had S.S. ummm makes you wonder.
deleted_user
deleted_user
If you have never been to the Sjogren's Syndrome Foundation website, i would suggest that you visit them.

I pulled the flyer at this link
www.sjogrens.org/files/brochures/ssf_whatis_ss_brochure.pdf
from their site and i pass it out to people that ask about the possible symptoms of SS.

the first time i saw it, i was amazed, and then suddenly most of my symptoms made sense!
deleted_user
deleted_user
Wow the gallbladder, I never linked that one to Sjogrens, but it sure is possible. I totally agree about doing the research first and finding a doc to listen(my doc wants my results from all the other doctors involved, because we know there are many) and then take the meds that work for us..
I take 90mg Cymbalta daily along with lyrica and methotrexate. I don't like the issues caused by methotrexate. I am serious when I tell you this I DO NOT EAT, and I gained 30#'s, is it the meds? Thanks for not laughing about the not eating because that is what 3 doctors have done to me. No Joke. Thanks for being here.
mseaton
mseaton
Wow, I had my gallbladder out also...hummm. That's interesting I wonder how many sjs have had their's out????
deleted_user
deleted_user
Which city do you live in? I live in Philadelphia and there is a Sjrogen's center here. The Rhuemy that heads it up, is in my office and I hear people travel from all over to see him. The downside is, he's so busy with confrences and research that it's hard to get an appointment...which is why I feel especially blessed to have a doctor in his office, as my doctor has told me he consults the head Rheumy on my case. If you want to check it out, here's the link: http://www.pennmedicine.org/rheumatology/services/sjogrens-syndrome/
deleted_user
deleted_user
I have been doing alot of research in finding doctors who specialize in Sjogren's. I found one website that gave me some names of doctors and clinics. www.medifocushealth.com . under conditions click on Sjogren's syndrome and it will list the states where there are Sjogren's clinics.