Sjogrens, Dry eyes, Diagnosis or No Diagnosis

[Lucy]

Folks - believe it or not, this came to me while I was trying to fall asleep last night. We've had a lot of talk on dry eye AND SJOGRENS just recently on this board. First, I just want to make a statement which makes sense to me and cuts to the bottom line. I understand if it doesn't make sense to others and that won't bother me.

MY OPINION: If you have dry eyes, you have dry eyes. Duh! Sometimes you have had them for 3 months, 6 months, 1 year, 2 years, 3 years and so forth. Each has a timeline from when their dry eyes started. For me, it was 7 years ago with the wonderful lasik surgery available to all of us with open pocket books. For 7 years, I've chased across the country seeing doctors and trying everything, I've connected with all the dry eyed folks on the internet--yes for 7 years. I had to stop working two years ago.

My eyes are not getting better. They will never be better probably than they are now. A frightening thought. Recently diagnosed with Sjogrens, there is nothing more or new for my dry eyes than before my diagnosis. In other words, a Sjogrens diagnosis made zippo relief or what might be available to me for dry eyes. I've seen a tendency for a few to check into the possibility of their having Sjogrens. That is fine. I certainly did check into it. But, only after 7 yeard did anything show up. Anything I did before that for testing (or if I'd had a lip biopsy) was negative.

Even with the diagnosis, ta da, I'M STILL WHERE I WAS WITH DRY EYES. I already have the scleral lens, the Panoptx, the drops of my choice, other prescription glasses/goggles/Tranquileyes. blah, blah, blah.

That's it, folks. There is nothing else. If you are looking for a diagnosis of Sjogrens because you are sick, that makes sense. If it's because you have dry eyes for a few months, probably means nothing in terms of a diagnosis. Besides, even if/when you have a diagnosis.......THERE IS NOTHING MORE THAN WHAT WE ALREADY HAVE. So, if you have painful dry eyes, they will be that way whether you have just ordinary run of the mill dry eyes (no such thing-I know) or have this awful other stuff. If you have "ordinary run of the mill" dry eyes, you obviously have a better chance at getting better through time, if nothing else.

I'm doing exactly the same for my eyes as I have been doing. Because "that's all there is."

[SusieD]

I understand exactly what youre saying. There is this tendency to think that if you get a positive diagnosis then theres this whole new realm of treatment that may be available for it - which as you are testament to, there is not.

I think it may have been Diana that commented in a similar vein, why would you want to know you have something, if theres nothing you can do about it.

I think thats why Im not pursuing this at the moment- a part of me does not want to know. Obviously if you develop other symptoms other than the dry eyes, it can be very unsettling and you naturally want to know whats going on with your body. I can see the reasoning for seeking a further diagnoisis in that situation.

For me personally, part of what keeps me going is knowing that there are still quite a few things I havent tried and one of them might help.

I guess the bottom line is in terms of your eyes you are no different now than you were before you were diagnosed - but hopefully you are experiencing some benefits from the other symptoms which you are being treated for? In any case you wouldnt have had access to them without the sjorgrens dignosis. I see what you are saying though.

[Lucy]

I guess the bottom line is in terms of your eyes you are no different now than you were before you were diagnosed - but hopefully you are experiencing some benefits from the other symptoms which you are being treated for? In any case you wouldnt have had access to them without the sjorgrens dignosis. I see what you are saying though.

You summed me up perfectly.

[elaine]

Sjogrens? Does it matter?

I have been struggling myself with the issue of whether my symptoms mean I have Sjogrens. My opthm. says I have it, the rheum. and ENT consults said I didn't, lab tests were negative. The lip biopsy was not only negative but caused lip numbness that never went away. So what different does it make?
I guess because if I have a Reason for the dry eyes and mouth, and all the pain, and know what the course of the illness often is, and that stress often exacerbates it, I would make some changes in my life that I wouldn't otherwise make. And maybe I would feel less like a neurotic middle aged woman with vague complaints for the doctor. On the other hand, I've read it's better the insurance company doesn't have a diagnosis like this. And maybe I need to feel more empowered regardless of whether I have a diagnosis or not, when it comes to stress, symptom relief and getting what I need (humidifier at work, books for the reading-impaired). I wonder if other chronic illnesses are responded to in the same way, some people feeling better off knowing what the problem is, and others not.
Elaine

[Amy09]

I'm going to have to play devil's advocate here and disagree w/ y'all.... for me personally, i've had these crappy dry eye problems since i was fourteen. it is in no way normal to have the degree of dryness I've had since I was fourteen. for over five years now, i've had to deal w/ drops, perscriptions, surgery, etc. and still have dry eye problems. something is not right here.

true, being diagnosed w/ something like sjogren's may not mean that you don't get any additional treatment, but for me personally, i would LOVE to know why in the world I had to deal w/ this day in and day out. there has to be some reason for it, and atleast if i had a underlying reason for my dry eyes, it would just give me some closure on the situation.

i've accepted the fact that I will probably be dealing w/ my dry eyes for the rest of my life, but it would just be nice to know why this happened to me in the first place. Hyperthyroidism? Sjogren's? A hormonal problem? Whatever it is, I would love to know. I would also rather tell people, "I have [insert underlying problem here] and that causes problems w/ my eyes," rather than going, "I have this eye disorder that keep my tear ducts from working properly," and having people my age look at me like I'm from another planet.

[Lucy]

Amy-you are right of course about wanting to have a DX if you believe after years you have an underlying illness. There was a time very recently on the board of someone shooting all over the place trying to find answers NOW. Going to lengths NOW, without having time to have thought things through. Getting your lip cut open with a one inch slit on the inside and having glands snipped out for lab is not something to be done like having a wart taken off. That's the point I was trying to make.

If you have the disease, it is going to take years to surface with positive bloodwork etc. Not just NOW as soon as the eyes become dry. My eyes are the same as before I had the damned lip biopsy, with no new treatment available. If someone were trying that "just because they have dry eyes" I'd tell them not to do so. After that, they'll probably have dry eyes and a lip that is numb from the lip to the chin to add to their discomfort. Plus, the bill for the surgery and lab. Wish I'd left my lip alone.

My references were not that we don't want to know IF we have something. But frantic people often make hasty, unnecessary judgements under stress. Let's get the frantic behavior under control and begin to look for solutions with a plan. My bloodwork is positive and if the first doctor testing me had done the bloodwork correctly, I'd not have needed the lip biopsy. As it turns out, it did nothing but leave me with a bad lip.

[jimmy]

FWIW, I had Sjogren's for years before it was diagnosed. This is not surprising, since the great majority of sufferers are women and the odds were therefore very much against my having it. Nevertheless, I appear to have beaten these favorable odds. First I had swollen salivary glands, then dry mouth, then dry eye, then I lost my sense of taste, then my joints ached. Finally I went to a rheumatologist, who did the bloodwork. It was positive, but because of the possibility of false positives or other factors, the best he could say was the test was "consistent with a diagnosis of Sjogren's." (However, because of the positive test, he did not believe I needed the invasive lip biopsy.) But he also said swollen salivary glands + dry mouth + dry eye in themselves very nearly represent a diagnosis of Sjogren's without any testing. Anyway, so far the diagnosis, while interesting, has really just been academic. It has done nothing to change or improve the treatment of the symptoms.

[Lucy]

Jimmy, if the Sjogrens has gone to the joints, muscles etc. there may be much your doctor can do for you. I've been getting treatment for systemic Sjogrens since last September and it has made a great deal of difference. I have to say it has not helped my eyes, though. While I have the dry mouth and lips, I've had no pain in or around my parotid glands. In fact, never heard of them until after I was dx with Sjogrens. My rheum thinks I probably had the disease for 7 years before last year's diagnosis.

Lucy