How did you first hear about Sjogren's? - Sjogren's Support

Sjogren's Support

751 members192 posts

How did you first hear about Sjogren's?

HelenHU profile imageHelenHU45 Voters
33
When I was first diagnosed
3
A friend/family member has had it as long as I've known them
3
Other (please specify in comments).
2
In conversation
1
When a friend or family member was first diagnosed
1
I met someone with Sjogren's
1
A celebrity who has Sjogren's
1
On a TV show
10 Replies
Lari profile image
Lari

When I was researching symptoms.

When I was misdiagnosed with RA and looked up tingling and burning symptoms affecting me so badly - already had been told I had Sicca.

Diagnosed with RA in 1987 followed by Secondary SS shortly afterwards.

When I was reading other posters comments about their symptoms and researched further.thanks to HU ive now arranged blood tests privately because I’m convinced after many consultants and gps lack of help ,ive found my problem.

UrsaP profile image
UrsaP

I researched symptoms probably 10 years ago. By 2013 I was fairly certain I have Sjogrens. However, two rheumatology departments have dismissed me having found nothing to confirm, despite acknowledging sicca symptoms. I was referred by last dept to eye clinic for managing symptoms, and a months ago I was told there, that they are seeing definite connective tissue disorder in my eyes. They can’t tell me which but are now treating.

orange33 profile image
orange33

My neurologist mentioned it and prescribed eye drops but I have never pursued this condition but the last few months my eyes in waking have been almost impossible to open them but maybe I didn’t give the eye drops a chance

KellyInTexas profile image
KellyInTexas

When I was diagnosed with antiphospholipid syndrome. My rheumatologist started checking me for Sjögren’s at that time.

When misdiagnosed with RA and I got very dry eyes soon afterwards - then onset of small fibre neuropathy everywhere led to me researching further.

Klutzy profile image
Klutzy in reply to

Besides Dr Google where I learned the symptoms of dry eyes and mouth, I learned about it from you.

Rheumy didn’t run So and Lo tests, or whatever they are for this. My ANA was negative so don’t think this is causing my issues.

Goesunderthebed profile image
Goesunderthebed

A Maxillofacial Consultant diagnosed Secondary Sjrogrens although I had seen a Rheumatologist in 2013. Still not fully diagnosed but have all the symptoms and being referred by My Dentist.

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.