Where do I go from here?: Do I just... - The Australian Sj...

The Australian Sjögren's Syndrome Association
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Where do I go from here?

Eeve
Eeve

Do I just take my Dr's diagnosis? If I had more faith in her I'd be happy, but I'm not so sure.

I've had dry eye since very young (maybe since birth but not sure). Diagnosed as a young child. Every singe eye specialist would tell me I'd grow out of it as a child, then as and adult in their expertise they'd tell me it was just a stage I was going through.... still here 40 something years later!!!!

Schirmer's tear test virtually zero

Aqueous layer - veritually zero (could be zero but eye specialist wouldn't make that call)

Lipid layer (oils) almost none, just able to pick up a reading after wiping over, and over and over multiple times back and forward over my bottom lid.

I have Meibomian glands, and most look in tact, with some evidence of trauma.

A lot of inflamation.

I have rosacea and ocular rosacea

I have a dry mouth feeling, but still have saliva (have had this long term).

I had dry other parts life long.... now even more so (age related).

Lots of other little things that (may or may not be related) my eye specialist though may be indicative of Sjorgen's or autoimmune and asked my dr to test.

As a non expert myself I left the test part up to my dr who has given me a result of the ANA test only, which was 160 speckled and told me I didn't have a high enough reading for her to refer me to a rhumatologist and because I don't have any symptoms.... (HUH?). Kind of dismissed me and wasn't really interested about my dry eye etc.

I've come home and seen that she did request ENA etc (only knew that was relevant after looking it up after coming home from the doctors), but she never mentioned any of the ENA results. Are ENA results definative.... will they tell for sure?

Do I trust she knows best? If not where do I go from here?

Victoria - Australia

3 Replies
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Beverly
BeverlyAdministrator

It's seems to me she has no idea about Sjogrens and the effects it has on the body .

If you have Rosacea you may have Lupus.

You can have Sjogrens for 6,8 or 10 years before it shows in a blood test.

You would be better off finding an Immuneologist.

It sounds like you have all the symptoms of Sjogrens.

Eeve
Eeve
in reply to Beverly

Thanks Beverly. I might need to find a new Dr, if she didn't think I need a referral to a rheumatologist I doubt she'll think I need a referall to an immunologist. Thanks for the advice though, had no idea about going down that path. I've had severe dry eye ell my life and just thought it was "one of those things" been to numerous eye specialists and no-one has ever looked into why. So frustrating after all these years to find out there could be more to it and that other things going on could be related.

Thanks again.

Hidden
Hidden
in reply to Eeve

For me and many others diagnosis often comes late. We can then look back and make sense of so many things!

I barely notice dry eyes these days I’ve lived with this for so long it’s just a normal part of my life and I apply drops and ointment habitually rather than out of any signal from my eyes.

Dry eyes really are just the tip of the iceberg with Sjögren’s. It’s a systemic autoimmune disease rather than just Sicca.

So if the dry eyes are your only major symptom then they can usually be managed with frequently applied preservative free drops, gel overnight and heat pads daily followed by a massage of eyelids to release oil from the mebomean glands.i have punctal plugs and find they help somewhat,

But what counts with distinguishing Sjögren’s lI feel, is whether you also have symptoms such as swollen glands, dryness in your mouth and throat when you swallow so you need water to get food down? Or if you feel achy and flu-like, have painful finger and wrist joints, burning in feet or hands or mouth, altered taste, IBS, changes in sweat or photosensitive rashes including Rosacea, Raynaud’s, neuropathy (pins and needles)?

Probably the most commonly felt symptom of all is the intense fatigue where you just feel you must lie down and sleep wherever you are. Some have dry nose with nosebleeds, others have kidney ie liver problems, others thrush and frequent UTIs.

Dry eyes by themselves could be a symptom of Sjögren’s but you probably would have many other of the debilitating symptoms I mention too by now. You don’t really mention these here if you do?

Other conditions such as Lupus, Hashimoto’s Hypothyroidism and RA can cause dry eyes. A rare type of Vasculitis called Behcets can too,as can Scleroderma.

So I think you need to find a new doctor having got copies of your positive ANA (and along with symptoms. 1:160 is positive enough to warrant seeing a rheumatogist) if you can get hold of copies of your blood tests results then this is pretty helpful and see if your ENA panel also has positives on it. If not then you may need a lip biopsy to confirm Sjögren’s as I did. If you find that you also have positives in ENA panel then this should be enough to diagnose Sjögren’s or others along with systemic symptoms and inflammation.

Please try and find another doctor who knows more and is prepared to help you find the answers you need.

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