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Original poster

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

33 replies

CamdenCake · 21/02/2023 12:46

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
😰😰😰

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Original poster
CamdenCake · 21/02/2023 13:03

any ideas

OP posts:
Original poster
CamdenCake · 21/02/2023 15:40

😰😰

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smooththecat · 21/02/2023 15:42

Did you ask why you aren’t being referred to rheumatology? If you can afford it I would bypass the system and pay for a consultation with a rheumatologist.

Paturday · 21/02/2023 15:45

Oh noooo are you the same poster whose dry eyes are ruining their life from another thread? I so sympathise. Can you see a different gp? Ugh! A rheum will be able to order more in depth tests, from my experience.

SirVixofVixHall · 21/02/2023 15:45

smooththecat · 21/02/2023 15:42

Did you ask why you aren’t being referred to rheumatology? If you can afford it I would bypass the system and pay for a consultation with a rheumatologist.

I agree.

underneaththeash · 21/02/2023 15:50

What was the level?
it’s quite normal to get have a few.
glad you managed to get the referral to ophthalmology.

Paturday · 21/02/2023 15:54

SirVixofVixHall · 21/02/2023 15:45

I agree.

Show quote history

Thing is won’t you then have to continue private treatment (costly) or go to the back of the NHS queue (long wait anyway)?

Original poster
CamdenCake · 21/02/2023 16:47

she just said ophthalmology will be able to do all the test i need
Im
really struggling to cope tbh

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Original poster
CamdenCake · 21/02/2023 16:48

How would I arrange to see a private rheumatologist.

so I just Google it and my town.

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Original poster
CamdenCake · 21/02/2023 16:49

Or do I have to sort that through my gp too?

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Grumpybutfunny · 21/02/2023 16:52

You sure your GP can't offer it? Usually it's offered on a standard immunology service as an ENA with anti-ro and anti-la done if ENA is positive.

Original poster
CamdenCake · 21/02/2023 16:54

Yeah she said she can’t get it on her computer so she can’t test for it

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Original poster
CamdenCake · 21/02/2023 16:56

She said it’s not on the nhs ice system or something

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AnnaMagnani · 21/02/2023 17:01

It's quite possible that some of the blood tests are only available for specialists to request.

If you want to see a private rheumatologist just look at the specialists at your local private hospital and pick one. Most see self referrals.

Be prepared for it to cost £250-350 for an initial assessment, a bit less for follow up appointments, any bloods or investigations will be extra as will prescriptions - although your GP may be happy to pick up the prescriptions on the NHS.

Original poster
CamdenCake · 21/02/2023 17:17

Thank you to all for taking the time to try and help me

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Original poster
CamdenCake · 21/02/2023 17:18

Sincerely appreciated

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AnnaMagnani · 21/02/2023 17:41

The eye treatment would be ophthalmology led. Having had a quick google of the treatment plan you would need a load of tests only they will do.

Would you consider private ophthalmology as a first step given the wait for an appointment is so long?

You have my sympathy, my DH had an over 6 month wait for an eye referral despite it being known he was losing his vision. We spent a lot of money but it was worth it to save the rest of his sight.

BlackInk · 21/02/2023 17:42

Where I am (Gloucestershire) the NHS lab automatically follows up a positive ANA test with more specific autoimmune screening (anti-ro etc). If ANA is negative they don't do the follow up testing. Are you sure this hasn't happened for you and GP just hasn't seen/passed you results? This would explain why the tests aren't on her system as such.

Original poster
CamdenCake · 21/02/2023 19:16

the blood test report says

Suggest check C3,C4,CRP,ESR if SLE

ao guessing they don’t automatically screen it after

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Original poster
CamdenCake · 21/02/2023 19:16

Yeah would definatey consider private opthamology referral too

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Xrays · 21/02/2023 19:18

Are you on Facebook? Join this group- lots of help and advice here.

www.facebook.com/groups/454589521294750/?ref=sharewww.facebook.com/groups/454589521294750/?ref=share&exp=9594

Worth joining Facebook just for that to be honest if you’re not on it.

Your doctor needs to refer you to rheumatology. They should also be prescribing eye drops based on symptoms - PF Drops 0.4% have double the active ingredient of the ones you can buy from Amazon / boots etc.

RattlewhenIwalk · 21/02/2023 19:19

Could you get a referral via your dentist. My Sjogrens test was done in the dental hospital, in a dental chair (not sure what the students or their supervising professor was though).

Original poster
CamdenCake · 22/02/2023 06:16

How did the dentist do the test ? Was it blood tests?

thabks for the fb link
I’ll check that out

here I am been awake since 5 unable to get back to sleep
feeling like I can’t cope with this any longer

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Original poster
CamdenCake · 22/02/2023 06:18

Just feel like I can’t go on like this

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Original poster
CamdenCake · 22/02/2023 06:39

If I went or a and e because I feel like I can’t go on like this would they be able to do the tests
the anti ro and anti la

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