Years and years, of chasing better testing. Have had dry eyes since the 80’s ( around time thyroid started showing issues) and dry mouth now for more years than can remember. Almost constantly now, could grate steel on. my tongue at at any point overnight!
This week I got a ‘weak positive’ test to an Autoimmunity profile. Yeh! It struck me as weird, that, like when eventually diagnosed with hypothyroidism (after a decade or more of being fobbed off), I was initially so chuffed to get this. No wonder our doctors think we are mad! Who would be so glad to get a positive result, a diagnosis of a life long condition, (whatever it turns out to be?)
The ‘joy’ comes from the long awaited vindication. Something I have known for so long, and which has been dismissed as ‘anxiety’, ‘depression’, ‘attention seeking’ , whatever, has ,at last, been acknowledged.
The joy comes from the possibility that maybe now something can be done, and maybe, just maybe the GPs will start being a bit more understanding and less assuming and judgemental.
I have a first referral appointment at a Lupus clinic this coming week. So this positive reading is very timely. Fingers crossed now that the appointment goes ahead, in this C19 climate!
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UrsaP
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Interesting, do you mind me asking if you have had any other symptoms? Daughter is being tested for Sjögren’s at mo with some long standing, odd, sporadic symptoms but predominantly fatigue. Due to see Rheumatologist again on 23rd but suspicious it will get cancelled.
I have lots of symptoms that could be Sjogrens, Lupus, adrenal or thyroid. That is the problem - 30+ years of thyroid, which took over 10 years to diagnosis despite symptoms. Pretty sure my adrenals impacted by the delay.
Fatigue has been a lifelong symptom, rashes and heat flares are others. Aches and pains. Ive been to rheumy, they say I have mild OA here and there. But have, apparently, ‘reassured' me (as if...lol) that there is no lupus or Sjogrens.
A friend is forever saying I have it. She saw the rash/reddness suddenly appear on my face along with the visible slump, a few weeks ago.
Trouble is knowing what is causing what. I’m hoping my appointment goes ahead on Thurs as been trying to get someone to take me seriously about this for too many years. I asked to be sent to a specialist lupus clinic in Bham City Hospital, on the advice of a friend. It is a bit of a trek but hopefully worth it. Especially now I have a positive reading. Timely.
I’m told there are specific tests that can rule in/out Sjogrens, a lip biopsy being one. Can you ask to get your daughter to a Lupus centre of excellence? My symptoms are sporadic and guess it is due to flares.
I’m looking back at my GP records and seeing just how long I have been asking about this - years. Scary! Don’t let it drag on with your daughter. Fight to get to the right place. Best of luck.
Thanks for your own experiences, all very helpful. You say rash then “ visible slump”? What do you mean? Daughter has occasions when her parotid gland swells only on one side.... most people wouldn’t be aware but I can see the face shape change. She also has times when she gets a coating on her tongue and bad breathe, her dentist always moans that she’s not bruising well enough and has inflamed gums. She gets aches and pains, dreadful headaches, times when she wants to eat but after few mouthfuls full, she has tested for dry eyes, she often wakes with a dry throat which improves throughout the day, her eyesight keeps getting worse and can get blurry, she is diagnosed epileptic, she is hyper mobile, her glands around ears/ neck can flare up, more recently she has been getting mild rashes ( like heat bumps) which come and go, pins and needles in fingers, low blood pressure ( typical for her age though), in shower lower legs go blotchy for a while, strange “ coating” feeling on hair noticed when getting it wet in shower. A whole random mix of symptoms that come and go with no reasoning. She has been tested for Lupus ( negative) but now she’s under a Rheumatologist he has run a whole panel of inflammatory bloods which we await the results. It has taken us years ( probably 8 ) to get a GP to take it seriously enough to refer her. I know exactly how you feel. All the best for your forthcoming appointment.
Your poor daughter. And you. All very worrying, bad enough when it is us that have the problem but when we see our children struggling it is so much harder. I have a 25 yr old son, who has struggled most of his life, cold. lethargic etc...I was convinced it was thyroid and no one taking him seriously. He caught a ‘glandular fever type’ virus (GPs did not test for in time! ) which has had such a dreadful knock on effect on him. Got his to Dr Peatfield in 2017, he reckoned it was his adrenals. Since being on supplements he is so much better. But stress can still affect him. Triggers dreadful eczema .
A lot of the symptoms you have mentioned I would say yes I have or get. Things like the hive type of rash on chest was more noticeable after showering. Quiet often it was there, lumpy, under the skin, but not so obvious to see, now almost a permanent fixture, and much more obvious, flares up worse at times. Blotchy leg, maybe not but certainly swelling ankles and feet. Acupuncture did help with this. Headaches - eye disturbances. I have had eye problems, since I was 18, recurring conjunctivitis, blurry, dry, ulcerated - left eye only, several times - redness, swelling, occasionally of eye itself.
Pins and needles too. Actually a friend of mine was diagnoses with hypothyroidism through P & N. Has she been checked for that- properly, i.e not just TSH & T4?
The slump I mentioned. It is a very sudden and utter fatigue, that wipes me out. My friend said she saw me visibly slump, like all the energy leave the body. My face went read too - cheeks. On that occasion I had a rash around the hairline too. Is she constantly itching? I do recall my dad giving out as I was always itchy as a child. My mother put it down to the eczema, now at 58, I’m wondering .....
I’ve been tested several times over the years, but usually it is the standard testing. Always negative until now. I think I started asking about Sjogrens c 2013. I’d get a really dry mouth, overnight, intermittently. Now it is constantly. I can wake after an hour and I could grate steel with my tongue, it is so dry. It is like all the fluid draining from my head when I lay down? So weird. I think I have lumpy swellings on the inside of my throat. And a now permanently swollen glad under the left side of my jaw.
So yes, lots of odd, intermittent and worsening symptoms. My friend who has been diagnosed with Lupus recommends a Lupus centre of Excellence if you can get your daughter to one. Ask specifically to get a referral there. I did. And I hope it goes ahead.
Lupus is notoriously hard to diagnose, as is Sjogrens, but made worse when GP’s not joining dots! Downside of not having a specific Dr to see all the time.
Hi. I want to comment on moisture that “seems to drain out of head”. It does seem that way! Also sleeping with eyes or mouth slightly open is a challenge I have Not solved. (Though to coat mouth with tiny quantity of Biotene mouthwash helps a little and Xylin “nighttime” ointment for eyes, which I use day and night alleviates some discomfort, better than any drops.)
In Sjögren Syndrome the dry mouth is due to auto antibodies attacking moisture-producing glands, such as parotid glands, lacrimal (tear) glands. [Note: Schirmer I test can measure tear volume.]
Most clinicians (even some Rheumatologists, don’t know but Sjogren’s also can affect ear wax production, skin moisture levels, digestive process (from oesophagus down), respiratory track (which is meant to have a light coating of moisture), vaginal moisture production—basically anything in your body that needs moisture it seems like to me!
When you do produce moisture, eg, tears or saliva, it can also be poor quality or not the needed ratios. For example, I still make a little eye tears but the lipid (oil from meibomian glands) component, which keeps the tears intact to coat or cover the surface of my eyes, is almost absent. Therefore my tear Break Up Time (“BUT”) is 2 seconds, whereas normal Break Up Time is greater than 10 seconds.
[The parameter of tear breakup time (TBUT) is important in the evaluation of tear film stability, and it is an essential criterion for the diagnosis of dry eye. It is defined as the time interval between a complete blink and the first occurrence of a dry spot in the tear film.
An Ophthalmologist can measure these things, even some optometrist surgeries, with slit lamp examination for tear film break-up time, and corneal and conjunctival fluorescein staining for both BUT and effects on eyes.
That’s long but it’s so hard to find good info.
Suggestion : do a search on Mayo Clinic or John Hopkins Hospital with word “Sjögren” and will get some good details. Also Sjogren.org who are trying hard to increase funding for international research on this rare and poorly understood disease. For those who can, possibly consider join and/or donate to support the important cause. Share with family Patient Info sheet from Sjogren.org.
Hiya, Thank you for the information. All good and will look into more. Struggle with general dryness, skin etc.
The hard bit is getting anyone to actually check anything. I’m not even sure I ever had the Schrimer test, despite years of being under consultant for ‘dry eyes’ (ulcerated eye) I must request my notes. I will investigate as you suggest in preparation for actually seeing the Lupus Clinic Dr. (So far a waste of time phone call only, as she didn’t even read the notes I sent her, including blood testing showing Weak pos AI profile and speckled IgG pattern.
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