I have read in quite a few posts that Sjogren's can cause decrease in Tear Quantity (as measured by Schirmer's Test) as well as dry eyes due to Meibomian Gland Dysfunction/Blepharitis.
But I was surprised that 5 different docs (3 Ophthalmologists/1 Rheumatologist/1 Oral Surgeon) said that my "dry eye" was likely not because of Sjogren's because I only have pronounced Blepharitis + Meibomian gland Dysfunction (My Schirmer score was 12 which is a little lesser than normal but not in the Sjogren's range) [All of them also failed to address the fact that my dry mouth/dry throat also started at the exact same time]
I know the Schirmer's test is one of the official criteria for Sjogren's diagnosis. Does that mean that Sjogren's almost always causes a significant decrease in Tear Quantity or does it start slow and worsen down the line?
My hypothesis is that I am at an early stage of Sjogren's [with slightly reduced tear flow, slightly reduced saliva flow, occasional tingling, occasional hands/legs falling asleep, heavy meibomian gland dsynfunction causing Blepharitis]. The doctors don't seem to think this is the case. I have currently been asked to take care of the Blepharitis Symptoms [compresses/expression/scrubs/tear drops] and have not been prescribed anything for the dry mouth.
Just curious if others have had similar experiences early on.
I cannot disagree with you. I had no idea what Sjogren's was...while I had an ENT treat me for sialadenitis (parotids) for five years before dx and an Ophthal who treated me for what she dxed as "allergic" conjunctivitis. I didn't have "pink" eyes. My eyes looked like the surface was bleeding. (wasn't bleeding..but looked like it). I had that for five years as well. Neither one of them said anything about what the REAL cause was. I am still smh.
Have you rcved Rx for either your eyes or oral cavity? If you are uncomfortable, ask. (and good luck :) )
c3
I had two optometrist diagnose me with allergic conjuntivitis. The third one finally did the rose bengal staining, didn't have to ask her since I didn't know about, and diagnosed me with severe dry eyes due to my tears disappearing literally with the blink of an eye. She immidiately put me on restasis. All three doctors are part of the same office. I also have blepharitis and meiobian gland disfunction.
Hi,
I was diagnosed with Blepharitis a year and a half before all my other symptoms came out and then finally diagnosed with sjogrens.
In my experience with dry mouth if your dry mouth is not servere as yet start treating it now before it does. Knowing what I know now I would treat it asap.
Cheers,
Jo
I had the Schirmer test last September and was told it was OK, the rheumy didn't think I had Sjogrens. I did have blepharitis which since then I have (I think) successfully treated with tea tree oil. However my eyes feel sore and heavy every day, getting worse as the day goes on. Like you I have a dryish mouth and completely dry nose, as well as awful fatigue. I am pretty sure I have Sjogrens, I tend to agree with you it can develop in different ways with different people.
I went to an ophthalmologist who specializes in dry eyes. She did not give me the Schirmer test, despite the fact that I have all the classic Sjogrens symptoms. Her excuse was that it is "not accurate," since people can have Sjogrens with a low Schirmer's value. I think there must be some truth to this. Symptoms count more than these tests.
I haven't had those tests much for my eyes, but it is good to have it done to have at least a baseline of your dryness for the future. Irish
@lindabridge: it's difficult to understand your ophthalmologist's reasoning when the lower the Schirmer's the more indication of Sjogren's.
I do agree that it's not a Sjogren's specific test, it simply measures dryness, not the source or cause of that dryness, but severe dryness (less than 5 Schirmer's) is "consistent with " Sjogren's.
I've had it only a few times in my 13 year dealing with Sjogren's, partly because there have been times that my optho said it could cause damage since my eyes were so dry and mostly because he could tell by looking. When he does do it, it's simply to see if I've actually come up from 0/0.
My eye doc wouldn't do a schirmers. She said it's uncomfortable for you and isn't reliable. The rose-Bengal stain is more reliable. My stain was a 1, which is low/mild. However my eyes felt really bad during time I saw her.
Well docs are all different. Some are very criteria oriented when it comes to diagnosis, if you don't fit the classic criteria you don't have the disease, others are far more open.
Sjogrens is a progressive disease though rate of progress and how is progresses seems to vary in everyone though for most it's a quite slow progression.
You might consider a couple of options:
1. Find new docs
2. As someone else said, seek palliative (comfort) care (FYI palliative care is not reserved only for the dying). This seems like an appropriate step no mater what and there are myriad products you can try to mitigate your symptoms.
3. Keep a symptom diary, it may help you learn whether certain foods, weather conditions, or stressors worsen your symptoms. This can be very helpful to show to docs who are willing to put pieces together.
Thanks everyone.
For me, the 100% proven issue right now is Blepharitis (Meibomian Gland Dysfunction) and mild dry mouth which started at the same time as the Blepharitis.
From the comments, it does look like there are quite a few people who experienced Blepharitis first.
Am super surprised that all 3 of my Ophthalmologists claim that there is no link between Meibomian Gland Dysfunction and Sjogren's.
I was diagnosed with Blepharitis 2 years before other symptons. It didnt really bother me much so I never really linked it all together.