Sjogrens-Disease.com Team
How long did it take you to get diagnosed? Or, are you still looking for a diagnosis?
What testing did you have done or what doctors did you see in order to get an official diagnosis?
Share your experience with the community.
cupcakevonsprinkleMember
Working on diagnosis now but that also means going through the IgG4 diagnostic process because it could be Sjogrens or Milk-something.
I've had serious eye involvement, inflammation, Uveitis, infections, keratoconus etc etc had the infection situation last almost a year and as soon as my eyes cleared, in came the Sialothisis, Parotitis, a plaque Psoriasis scalp and neck outbreak and just all hell broke loose and Sjogrens which I never even suspected became the primary a-hole in my life that used to be dominated primarily by Psoriasis/IBD/Vascular Compressions/Exocrine Pancreatic INS and Smas.
Curious if anyone else is dealing with or has advice for those with serious Salivary stones, inflamed glands and what do you do with all the rocks minerals and crystals yr body makes? Do you save them all or just some for testing? This stuff has me feeling like a freakshow and gaslighting myself into thinking I must be imagining some of these symptoms, this can't be real life 🤦🏻♀️😔
Williams473Member
I'm still waiting for a diagnosis
StampercMember
I think at first, I thought my symptoms of dry eyes and dry mouth were just normal aging. As I became more miserable I reached out for help. Two things that have helped me most: cauterizing of tear ducts by my opthalmologist and mouth tape at night as I would have to get up several times each night for sips of water, yet would still have such a dry mouth and tongue, causing extreme tenderness and intolerance of many foods and toothpastes.
Williams473Member
DonnaFACommunity Admin
CommunityMemberc90decMember
I've had dry eye syndrome for decades, but I have facial dystonias so Botox causes dry eyes.
About several years ago had an attack of pain and swelling in both my knees. My Internist took xrays and no arthritis was seen. Haven't had an episode since.
Started noticing trouble with my mouth being dry about 3 years ago. My Internist sent me to a Rhematilogist. She tested me for everything and SD Primary mild showed up. Been seeing her every 4 months since and she just put me on a RX to help with the dry mouth. The daytime is good but nighttime I use sugar-free Act tablets and Ximelts sugar-free as well. Wakeup multiple times during the night to take sips of water.
Also have insomnia most nights and this along with dry skin and vagina are also symptoms. I'm 75 and use a CPAP machine for mild sleep apnea. Sure that doesn't help with getting comfortable. All and all am glad at present this is the only autoimmune disease I have.
DonnaFACommunity Admin
Williams473Member
