It took 35 years for me to get a diagnosis - 35 years of hell.

I've had this disease for years but no doctor was at all interested in diagnosing me.

The part that drives me nuts is having to explain myself over and over again. "I'M NOT FEELING WELL. I AM SICK!" I tell people. They just don't get it. "Well you don't look sick." My family has been gaslighting me for over 30 years.

I could have accomplished so much more in my youth if I had been diagnosed correctly. My Ana was always high but never was diagnosed til later when my sister was diagnosed with sjogrens. I feel so much better with the right treatment now.

I had Sjogrens for at least 20 years before diagnosis, my family doesn’t understand how it makes me feel 😢

I love you sister.If i am allowed to say that.Sitting in that boat too.Jesus calms the storm❗️☀️

I was told for two years to see a mental doctor that I was fine after two years I went back to see the do tor finally he se t me to see a RA doctor which said I had fibromialga sjogens lupus..

It's trying to keep going to doctors. When it takes years, it's like a career - getting a diagnosis.

The hardest thing is friends and family thinking you’re just making it up. For the last 10 years it was always something with me. Not fun for me. Migraines. Dizzy, fatigue, bladder IC, weight gain and weight loss, sometimes I hurt from the air pressure as someone is just passing me in a store, now I have no slobber my esophagus is sloughing off , I’m coughing up tissue, RA now ,and I had a girlfriend say to me what are you dying from now. I have a small circle of friends it just got smaller. Finally I have a new PCP that looked at me and said you have Sjogren disease. I just cried like a baby. I see the RA doctor the end of July . PCP put me on hydroxyclorquine I hope it helps. I’m now 1 month on it.

Me too. Thanks you for your channel.

The host is wonderful. She kept trying to reel in the guest. The guest rambled on and on about menstrual problems, teaching art, etc. I came here to learn more about Sjogrens. And BTW, they did have the ANA ( Anti Nuclear Antibody) test in 1980.

It took me 3 years to find out that I have sjorgens disease

Describing presence is actualy my life.i am diagnosed with AS. And suspected Sjorgen....

I have several autoimmunes and I’m also experiencing the systems of Srhojns

I went to the doctor today and took blood to test me for this i have alot wrong with me

I had Glandular fever (mononuclosis) at 21 and and a viral infection in my late 40's that behaved like meningitis I. noticed a big difference in my 2 pregnancies. Second one at 34 was like I had low thyroid, less amniotic fluid at the end, shingles on my tummy. Stomach problems throughout my adult years but i felt like a malingerer all my younger adult years. I had an infected parotid gland at about 49 and soon after lost 2 molars after unsuccessful root canal attempts. Also it should be mentioned that 90% of sufferers are women and it gets much worse after menopause. It seemed to be menopause that really stepped up the symptoms and I started to get Raynauds in my hands. Stabbing pains in my eyes. The Raynauds and a strange condition of nodules that showed on my knuckles that actually drained joint fluid was what finally made me "demand' a referral from a random GP to a Rheumatologist. The GP was reluctant to give me the referral or a steroid puffer for my struggling lungs after the swine flu outbreak in Australia. (I haven't stuck with one GP as they seem to retire or not take me seriously) The Rheumy asked if I had dry eyes and did the blood tests which had a very high ANA result. Many years now struggling with the dry mouth and dry eyes. I have tried every drop and gel available. The usual medications, pilocarpine, hydroxychloroquine etc, for dry eye had too many side-effects. As part of my flares I get shingles outbreaks and keep anti-virals on hand. I have damaged eyes, I had shingles in an eye which has made it very dry and easily infected now. I've had punctal cauterization (not a great help) and dental issues. Now I can't eat a meal or swallow without water. My lungs are getting weaker very gradually and my bowels are mostly constipated. My diagnosis took 20 years. It's time-consuming and expensive to see specialists and most GPs do not connect the dots. There was little info out there 20 years ago. I am 72 and just live with the condition and try to stay on top of what keeps it under control. Looking back, My 6 siblings haven't shown symptoms that I am aware of, but perhaps my father had some symptoms and went undiagnosed. He had hiatus hernia, heart problems and high blood sugar. I feel viruses and hormones have played a big part and hope there are more treatments in the future!

Thank you so much , you remind me of me! And don’t hav e support it’s good you have

Helpful and definitely can relate on the good, bad, and ugly. Resiliency and agency indeed so valuable.

They treat my Symptoms not the disease I have had similar things I have more than one Sjogrens , Scleroderma , Fibromyalgia. Hypothyroid

This is hard to follow along

Question…. Has Anyone gotten hives, elevated itching nearly Everywhere while on hydroxy?? I’m stressed at how I seem to react to nearly All meds?! Help?

Light flu.so true

This woman sounds like my body double. 😅

I've got this Dry mouth and lips non stop. It won't go. Tired.

My medical doctor just confirmed me better and very okay after undergoing DR Madida herbal treatment plan for my Meniere disease and Parkinson Disease.

I get tired in afternoon , red and inflamation everyday

I am the same way I keep going until i cant go anymore than i pay for it for days i started with this pain in my early thirtys

my eye doctor told me this at 63 i raised 5 kids i was told i have rehumatoid and fibro diabetics or cornary arteriey diease