Tested positive for ANA showing signs of Sjögren’s syndrome, dr hasn’t referred me to rheumatology?

[CamdenCake]

She apparently can’t do the test for anti ro and anti la as they are not in her computer system

She’s referred me to ophthalmology
as the dry eyes are unbearable
she says they will be able to do the anti ro and anti la test but it might be a good 6 month wait
😰😰😰

Try A+e that has an eye casualty. Often daylight hours only though.

SLE is lupus, not Sjogrens and they’ve suggested screening for complement and inflammatory markers not ANA, do you know if the antinuclear antibody titre was positive? Regardless- ANA alone doesn’t constitute a diagnosis - it’s history based, blood tests are supportive and then schirmer test re eye dryness/uss for parotid and salivary glands or biopsy. There are people who have positive antibodies and no active disease. I was diagnosed after investigations for crohns then rheumatoid arthritis - negative CCP, positive RF, extremely positive ro and la, uss showing patchiness and tear film less than 2s. Even with the diagnosis at present I use drops for my eyes - pilocarpine or tear duct plugs are significant interventions that are would be ordered by opthamology not rheumatology

patient.info/doctor/sjogrens-syndrome-pro

I am hesitant to post this because I know this makes me unusual but I didn’t have any of the standard tests to diagnose sjogrens- I do have a positive ana (which just shows some form of autoimmune disorder, not which one) but all my other blood work was normal. I have various autoimmune issues - Addisons, hypothyroidism, pituitary issues, intercystinal cystitis confirmed by cystoscopy, and I saw a rheumatologist because I was having persistent oesophageal, vaginal and oral thrush (which relates to dryness), fatigue, joint paint and dry eyes etc. He diagnosed me with sjogrens and lupus based on a process of elimination and my medical history- ie “sero negative” lupus; have a google of this. I was referred to an oral specialist and they did tongue biopsies (not the lip biopsies tending to go with sjogrens) because I had white patches of excess skin along my tongue - no one still really knows what these are but they think it’s caused by dryness and I was also diagnosed with lichen planus.

What I’m getting at is that you don’t always need all the various diagnostic tests to be diagnosed.

Yeah I have all the other symptoms too
drybish mouth not as severe as the eyes tho
thin hair
lost a lot of weight
pain in my arms in the muscles
this all been going on over 6 months

dry Down below too

How are you getting on? FYI the way I found a private consultant was to ask the GP. You can also look at local private hospitals, Spire etc. The consultants will mostly work in the NHS, mine agreed to see me back in the NHS. It’s queue jumping, but they expect people to wait ill for years with no quality of life and affect on work capacity and finances. It’s not acceptable.

Hi Camdencake, I’ve also just been diagnosed with Sjogrens in the past week and I’m waking in the night feeling terrified!
I was diagnosed by a Rheumatologist after being referred by my GP. I have mainly dry mouth and joint pain. Your GP should definitely refer you to Rheumatology and they will do all the blood tests. If you want to go private you need to get a referral letter from the GP.

@Maddie52 hi what bloods were tested do you mind sharing what your rheumatologist tested and investigated in order for you to be diagnosed with Sjögren’s syndrome ?