sjorgens syndrome

New diagnosis and before diagnosis
1

Hi all, I hope you can advise me,

have previously been advised probable MS then ME and then neuro told me to believe in the other neuros opinion of MS and that it was better than the mri results…not looking for exact diagnosis anymore, past caring, its a waste of my precious energy but i do need to try and sort some help with symptoms.

My eyes have been so dry for a few years and now my mouth is suffering dryness too, I am getting ulcers and painful sores in mouth and throat along with swollen gums. I have had a blood test for sjorgens which was negative but i know its not 100% test.

Some days my mouth is better than others but my eyes are always quite bad. is this normal that this disease can fluctuate ( if it is that)

have had swab taken = negative for virus etc

had camera up nose and down throat because i get hoarse too= all clear but referring to speech therapy to strengthen muscles in that area.

had a course of pills for oral thrush = no effect

have removed, in turn, all medication that was likely to have this as a side effect and re introduced.

am now waiting for referral to rheumatology.

please, is sjorgens something thats always prominent or does it appear in waves of worsening symptoms?

its so sore to eat, drink, talk at times. Hubby getting some peace though.

what do people use to treat this and does it work?

thank you very much for reading this far

2

Hi Mandymary,

Not seen you around for ages! Is everything OK - apart from the obvious exceptions listed?

I’ve been having problems on-and-off with a dry eye for years, and, increasingly recently, with a dry mouth. However, I’ve never succeeded in getting a diagnosis for the eye, and haven’t even bothered telling anyone about the mouth. Although I’m diagnosed with MS, I feel a bit like you, in that there are some things that don’t quite fit, and I’ve never got answers for, but it doesn’t seem worth my time and energy to keep pushing.

Sjogrens is an auto-immune condition, but not particularly linked with MS. It can occur by itself, or in tandem with rheumatology disorders.

I can’t tell you whether it’s a fluctuating condition. My eye certainly is, but it’s never been diagnosed as Sjogrens. When it’s going through a particularly bad phase, it looks exactly like infectious conjunctivitis, but lab tests showed no infection - in fact, the swab came back cleaner than normal. Whether that means I’m missing some “friendly” bacteria, that should be keeping things in balance, I don’t know.

I use moisturising eye-drops for the eye, with only partial success, and also the Optrex spray-mist, that you spray on closed lids. You can even spray it on eye-makeup, without disturbing your look.

I have discovered by trial and error that applying a trace of vaseline on the lid before bed - note not IN the eye - seems to stop it getting so crusty overnight. I’m not sure it’s medically recommended to put vaseline anywhere near your eye, but I got pretty desperate, and found it definitely beat doing nothing.

For the mouth I got dry mouth mouthwash and spray from Boots. I think they contain glycerine or similar. Not a miracle, but slightly better than doing nothing. Again, most useful at bedtime. During the day, I don’t have such a problem, because I can sip a drink.

When I was being investigated for MS, I was definitely asked about nose and/or mouth ulcers - not because they’re MS symptoms, but because they could point to something else. So I do think this symptom is relevant, but doesn’t point to MS.

Take care.

Tina

x

3

Hi…

Have you considered ‘meibomian gland disfunction’? It wouldnt cause mouth problems though, but it is the most common cause of dry eyes in adults.

Meibonium glands are located in rim of eyes and lash area. Their job is to produce oil that lubricates the eye. In some people they pack up all together (but this is more unusual), in other peope they become a bit sluggish. The oil they produce can (in some people) starts to become thicker, which means it doesnt run as freely or work as effectively. The glands themselves can get a bit blocked by the too-thick-oil, which can result in blepharitis or conjunctivitis symptoms (might be worth looking into tina?) And because the oil isnt as plentiful in the eye, the eye becomes dry.

If it is meibomian disfunction, avoid things like vaseline, as if it gets near the glands it will block them further (vaseline is made of really large molecules). the standard advice from nhs is to do the following morning and night

(1) make a weak solution of babyshampoo and water, or buy a lid-cleanser from your opticians. gently use this to clean around the lash line (use your finger gently; they used to say use a cotton bud but dont reccommend this anymore)

(2) Put a damp, warm cloth over they closed eye for a few minutes.

(3) Massage the eyelids - on upper lids, use fingers to gently stroke downwards towards lashline, on lower lids, stoke upwards. this, combined with the earlier warm compress, can encourage the oil to run more freely through the glands and helps reduce blockages. there is hns info leaflet you can get from opticians and pharmacists that explain this properly.

(4) if glands become seriously blocked they can sometimes get infected, medications might be needed then.

It is very very common and it is not linked with MS as far as I know.

Obviously couldnt say whether thats whats going on for you but might be worth checking out? optician can advise next time you have sight check, or you could go in to ask? lots of info on web in you google meibomian gland.

4

also, although meibomian gland wouldnt cause mouth probs, lot of medications can cause meibomian gland dysfunction - and the same medications often cause mouth to get dry also? might be worth checking out.

5

Hello I’m under a Rheumatologist for Psoriatic arthritis, I’ve recently been diagnosed with Ms. I don’t have a problem with dry mouth but my eyes are very dry and sore. I also get double vision. My gp prescribes Liquifilm Tears for me which really help…wouldn’t be without them. All the best to you, Noreen x

6

Hi I have been on this bandwagon too as have no confirmed dx yet. Possibles like ms and radiation myelopathy. I did look into sjorgrens too but my tests were normal. The thing is nervous system damage from sjorgrens can be treated. So it is important to get the right dx. Lesions caused by MS are more common and neuro will always thinks that first. Lesions from sjorgrens do happen but are much rarer. Nervous system disorder caused by sjorgrens follows a more PPMS form. I did post on here about an article I read were in a group of people dx with PPMS with a negative LP about 40% didnt have PPMS but sjorgrens instead. Did you have a lumbar puncture. I would suggest if that was negative then ask to be tested more thoroughly for sjorgrens.

Moyna xxx

7

Thank you all for your replies, I knew this was the best place for support, nothing out there matches it

Tina, I havent been around as had ME label so didnt think it quite right, not sure if thats the right label but still refuse to put myself through any more stress and acceptance of "it is what it is " suits me fine. The only time its a bit of a problem is when people ask me whats wrong and I just say ME as its easier. My symptoms have worsened but now that i no longer work i can, at least take better care of myself. How are things with you ? Are you still working?

I tried the optrex spray but it didnt really help as it moisturized the outer eye only and I needed something more so the gp gave me some artificial tears gel but they’re not really practical for daytime use as you cant see much but did use them for night time but eyes just felt sticky and stuck together even more. i found that getting up in the middle of the night for a cup of tea helped as the steam off it eased my eyes. (not really practical either though ) i have got more gel from gp along with an artificial saliva spray which helped and it didnt taste awful either. He still looked at me like an alien though when i explained that the single use eye gel was too difficult to use, they have no idea of how draining it is to try and hold arms up and negotitate both eyelid and medication

I know that you’re not supposed to use mouthwash which contains alcohol but didnt know that there was one specifically for dry mouth, thanks.

Sjorgens has apparently no single blood test to 100% identify it, the ANA blood test that they do is something like 60% accurate according to the nhs website, I did wonder if the blood test would be more relevant at the actual time of a flare up.

Thanks Tina

Anon thank you for taking the time to reply, i was diagnosed with blepharitis a good few years ago so will look into this in more detail and will try your suggestions. Its so good to have practical advice and support.

Noreen, thank you too for replying, is liquidfilm a gel ? i like the sound of a liquid film that covers the eye. I have been referred to rheumy so maybe something will come to light, maybe account for a lot of my other symptoms too…

Moyna, i didnt have a lumbar puncture although wish i had just to rule ms out completely but never pushed it as im quite afraid of it my condition is representative of the ppms as its progressing to the point of being able to do less and less as time goes on so that may be reassuring to know that there could be other causes for the state of my wellbeing. Im hoping that rheumy will be more understanding of my condition and hope to actually get something to help (though I wont hold my breath, yes im quite disillusioned now) thank you so much for responding. xxxxxxxxxx

8

It’s called. Liquifilm Tears Apply Four times a day as required. There supplied in plastic ampoules for single use. 30 in a box. No stickiness and very comforting

9

thank you Noreen, I’m going to try this brand

10

Hi MandyMary

You’ve had some good advice about lid hygiene above if your lids are getting inflammed/ sore / red/ crusty. It’s not a quick fix can take months and sometimes you have to main hygiene.

As for artificial tears there are a whole host of drops available from the chemist/GP some with some without preservatives. It is a case of trial and error - so a slow process as you should give each one sufficient time. You may find using different products night/day beneficial. Ie using more watery products during the day are less blurring where as something viscous would be beneficial at night when we’re not needing to see. These are products you need to use long term though.

If your eyes are red, itchy, stricky or have a stringy discharge then it’s more likely an infection then a visit to the doctor is a good first.

If you’re worried about dry eyes the optician can check this with some special paper - I had the test when I was considering contact lenses. Or you can always asked to be referred to an ophthalmologist. Though I would try some things first before you go as this is most likely what they’ll ask you to do.

As for dry mouth - I’m not so sure on that one. Sucking a sweet as this does stimulate salivary glands and may keep your mouth more moist.

The ANA is the blood test I think you require for Sjogens.

Hope that helps

Reemz

X

11

Hi marymandy, I just thought I have to mention that you can’t ‘rule out’, MS or sjogrens, with a lumbar puncture, as although most with MS have oligoclonal bands, so do quite a few with Sjogren’s, maybe 40% in some studies? Sian