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  • #16
    Vicki-what I'm saying is........you're trying too much all at once. You won't know if something does work. You will be better for a day now and then. "They" do a lip biopsy sometimes if the bloodwork doesn't show positive. Sjogrens is not going to show in a lip biopsy either necessarily. If it takes 7 years so show in bloodwork, they probably have no idea on the lip biopsy (how long it takes).

    Even if they do a lip biopsy NOW and you have Sjogrens show up NOW........you are still going to have dry eyes. THERE IS NO SINGULAR CURE. That's why we are all on here bumping around. I'm sorry--I don't know how you can't not work. We are all trying to find ANSWERS.

    I do have the Boston Scleral Lens. For a year now. But because of other problems, I've only been able to wear them about 25% of the time. I need to go back for a refitting--and this will be my 3rd trip to Boston within a year. I am very ill with Sjogrens now and am doctoring to try and get the OTHER SJOGRENS PROBLEMS UNDER CONTROL so I am well enough to make the trip to Boston. So, the Boston Lens are no guarantee for fixing dry eyes.

    I see you have inner ear things going on and a bunch of stuff. Even if you could find a magic drop or "fix" for your eyes, the other things would not likely be fixed just because your dry eyes felt better. Rebecca, on another thread mentioned how to methodically try things and how you have to do it one thing at a time. I'm not going to write anything more on the bb to you, Vicki. I feel as though I'm spitting into the wind. YOU NEED TO CALM DOWN, STOP JUMPING AT EVERYTHING YOU SEE ON THE INTERNET SAYING "DRY EYE" AND perhaps talk to someone about how to do this. In this frantic state, you are not going to find any solutions.

    It doesn't make you feel better, I know, but many of us on here are or have been just as bad as you are. No one will die from dry eyes, although you probably feel like it will kill you. one more thing. REST YOUR EYES AS MUCH AS POSSIBLE. KEEP THEM CLOSED. SHUT AND WEAR A MASK. IF YOU ARE READING OR ON THE COMPUTER CONTINUALLY-THIS IS NOT HELPING. KEEP THOSE PEEPERS SHUT WHEN YOU CAN.
    Don't trust any refractive surgeon with YOUR eyes.

    The Dry Eye Queen

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    • #17
      I do believe it does not take long to give everything out there a a good fair try. That's to me more of a problem than trying too much. That is why I went searching for less common answers and while I realize someone would have found it that has been dealing with this for years, some things may work for one and not another *and* I keep having hope that there is some thing that can maybe help that was easily overlooked because it is not a common solution like plugs, artificial tears and restasis. I have dealt with tmjd for 6 years and not anxious to spend $ on more than I already have and that is a lot, but I am open at the same time. Know what I mean? As far as your sjorgens, are you dry more places that just your mouth? Knowing it can take 7 years to be diagnosed with it makes me wonder if there is much reason to see the rheumy next week. I too can;t go to Boston until my other health issues are under control so I think I understand better than you know. I will take a small break from searching though as it is exhausting me and the peepers. I worry what things like pregnancy and menopause could do to my dry eyes, both are known to make it worse. I hope you get some relief so that you are able to make the trip.
      Last edited by Vicki In Oregon; 30-Oct-2006, 18:55.

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      • #18
        My eyes have been dry since the lasik surgery 7 years ago. That's a long time to have dry eyes. The more recent sicca symptoms - numb lips, dry mouth, dry throat, trouble swallowing have not been with me 7 years. I can pinpoint these to about 3 years ago. I did not STILL tie it together because I'd had a couple of bloodtests that were negative after one positive. Oddly enough, my skin is not terribly dry as with a lot of Sjogrens patients.

        I have systemic things going on in major organs, muscle problems too, and don't care to discuss that further as it's not a moot point here. I know my eye problems will not get better and possibly worse as the disease progresses. I have to take care of my eyes and mouth the best I can and now try to see what else is going on in a more serious fashion. This could be life threatening when internal organs are involved. Dry eyes are not life threatening.
        Don't trust any refractive surgeon with YOUR eyes.

        The Dry Eye Queen

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        • #19
          I'm so sorry Lucy. I read about sjorgens sometimes because I run accross it when I read about dry eyes and had no idea that it can affect the organs like this. I assume it is a genetic disease as I have not read anywhere what can cause it. I hope your doctors can help you so that this terrible disease does not progress.

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          • #20
            Major problem

            I'll say this once and then drop it. Most people think that Sjogrens is only dry eyes and dry mouth. A lot of doctors think the same way. I've even had one doctor brush it off and say it's only a nuisance disease. Unfortunately it's a terrible nuisance but it is terribly life altering as well as dangerous for the people who have it. Every organ in the body can be affected by Sjogrens as well as the nervous system. Never let anyone tell you that Sjogrens is only a nuisance disease. The public and most doctors need to be educated.

            Billye

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            • #21
              Looking for this thread, please

              Rebecca, on another thread mentioned how to methodically try things and how you have to do it one thing at a time.]
              If anyone can direct me to this thread on trying one thing at a time, I would really be grateful. I am new to this and have had a tendency to get depressed about it.

              Thanks in advance.

              CarolynYvonne

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              • #22
                For CarolynYvonne

                Here's a link to the thread. I think it's my first response in the thread.
                Last edited by Rebecca Petris; 31-Oct-2006, 21:07. Reason: Adding link
                Rebecca Petris
                The Dry Eye Foundation
                dryeyefoundation.org
                800-484-0244

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