# Sjorgren's Disease



## Feisty (Aug 14, 2000)

Anyone here suffer from Sjorgren's Disease?If so, what do you do to alleviate symptoms?How were you diagnosed? And by whom?I'm not sure, yet, if I have it, but the symptoms point to it. I saw an Opthamologist today. For the time being, he has started me on Restatis (eye medication) twice a day and Refresh Endura Lubricant drops as often as I need them. He wants to see me in 6 weeks. He refused to discuss Sjorgren's with me, even after answering his questions as to whether I experience dry mouth and very dry skin (which I do, on both counts). When I asked him how to go about testing me for it, he ignored the question, handed me a prescription for the Restasis and said come back in 6 weeks. Arrgghh. I was not impressed with him at all.Besides the evasiveness, he gave me this "off the wall" lecture on having RK (Radial Keratotamy) 10 years ago. I was aghast and asked him what that had to do with my dry eyes problem. He said "probably nothing", but didn't you know.....blah, blah, blah. I finally told him I was glad I had it done and that I was here to find out if I have Dry Eye Disease or something else going on and to please get back to the current problem! Arrgggh. And then, here he is examining my eyes about 6 inches away from my face and his breath is reeking from garlic.







He was also grossly overweight, breathing shallow, and very sloppy looking. Yuck! I almost got up and walked out. Maybe I should have.







I'm thinking about getting a second opinion from another Opthmalogist. Does anyone have input on this?Thanks.


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## M&M (Jan 20, 2002)

Eegads Feisty! That guy is disgusting! A second opinion NEVER hurts. Never. And any good doctor would say the same thing. I have a dear friend who is also a "Fibromite" and has Sjogren's Syndrome. She uses eye drops, and some kind of stuff in her mouth - I'm not sure what it is exactly though. I'm sure it isn't a normal "mouth wash", maybe it has some type of moisturizer in it. She has to take really good care of her teeth, since the saliva doesn't take care of them for her. Let us know if you opt for the second opinion, and how it goes. Are the eye drops helping?PS - I just thought - Is Sjogren's classified as an auto-immune disorder? If so, maybe you should see a Rheumy as opposed to an eye doctor? Just curious.


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## Feisty (Aug 14, 2000)

Hmmmmm.....that's a good question. I'll have to check into that.Yeah, the more I think about it, the more I think I should get a second opinion. I don't think I want to go back to this guy. I chose him because he is "in my insurance network". I'd like to fling the health insurance out the door for all the good it did to send a person to a so-so. I'll probably have to pay out-of-pocket for the second opinion because it will most likely be out of network. Always something.I'll keep you posted.Thanks!


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## Susan Purry (Nov 6, 2001)

> quote:When I asked him how to go about testing me for it, he ignored the question, handed me a prescription for the Restasis and said come back in 6 weeks


It sounds as if the opthalmologist probably doesn't know a great deal about Sjogrens Syndrome and testing for it. I really think that if you or he thinks Sjogrens is a possibility, you should see a doctor (rheumatologist, or a family/general doctor) to get your bloods done. Best wishes,


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## Feisty (Aug 14, 2000)

Thanks, Susan. Is it a blood test that confirms it? I'm going to have to get in to see my Doc, I guess.


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## Susan Purry (Nov 6, 2001)

Feisty, there's no one specific test for Sjogrens. The autoimmune panel blood tests are done though as some are often elevated in Sjogrens. Combined with your symptoms, the results will help your doctor make a diagnosis. Here's some more specific info on diagnosis: http://www.sjogrens.com/syndrome/diagnosis.html


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## Feisty (Aug 14, 2000)

An update.I went to a different Opthamologist for a second opinion. Wow! What a difference. He spent an hour and a half with me verses the shoddy 20 minutes with the first Opthamologist. He inserted a "disposable" tear duct plug in the right eye. If that seems to help somewhat with the dry eyes, when I returned Jan. 7th, he will insert more permanent ones. He said more women than men tend to have dry eye syndrome---they don't really know exactly why, but suspect it could be hormone related.The temporary plug, unfortunately, came out within 24 hours; but I have to say, it did seem to help some.My GP ran the antibody blood tests to check for Sjorgren's. The results are "within normal range"---whatever that means. He also wrote a note asking if I want to be referred to a Rheumatologist. I've called and left a message for him to go ahead with the referral.The GP said that both Sjorgren's and RA are auto-immune disorders/diseases and it is best to see a rheumatologist to be sure and to receive proper treatment. It'll probably be 6 to 8 weeks or so before I can get an appointment. In all the years I've had Fibro (20), this is the first time that a Doc has admitted that I should probably see a Rheumatologist. I'll keep you posted.


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## california123 (Jun 8, 2003)

Hi Feisty,On the subject of radial keratotamy and dry eye, I've read a number of articles linking the two and my sister has had dry eye since her lasik surgery. So I guess it does effect some people that way. Take care.


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## Feisty (Aug 14, 2000)

Hi California.Yes, I have heard and read things about that, too. Had I known more about it, I probably would have reconsidered. But what I didn't expect or "need" was a lecture from the Opthalmologist about it.







I thought that was totally unnecessary and out of line. Not professional at all. After all, a lecture sure isn't going to help the dry eye problem now that I have it.


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## azvessey (Dec 23, 2000)

I meant to post this one last week but couldn't remember who had asked the question. My sister has this problem also.Gamma linolenic acid (GLA) (18:3 omega-6)is suggested to helpas follows.Prevent drying and atrophy of tear and salivary glands (Sjogrenï¿½s syndrome)GLA is the precursor of DGLA, the parent of the 1-series prostanoids, as well as the precursor of arachidonic acid, the parent of the 2-series prostanoids. It is found in hemp, borage, black currant and evening primrose oils. It can be produced in human tissues by the action of desaturase enzymes on linoleic acid. http://metametrix.com/articles/ Clinical Applications of Fatty Acid Profiling.htm


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## Feisty (Aug 14, 2000)

Where do I find this GLA? And in what form? Capsules, liquid?


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## azvessey (Dec 23, 2000)

Sorry about that last link. It was obviously very aged; instead try: http://metametrix.com/Publications/Fatty Acid Profiling/I personally am a great fan of the old fashioned evening primrose oil 10% GLA in capsules bought fresh and keep in the fridge (in Australia).Cheers. Tony


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## Susan Purry (Nov 6, 2001)

Following your appointment on the 7th, wow are those more permanent tear duct plugs working for you Feisty? I'd sure love to try some of those!!


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## Feisty (Aug 14, 2000)

Thanks, Tony. I will check at the health food store to see what I can find. The new link you posted doesn't work, either. I get a "this page can not be displayed".Susan---I went back for another check-up last week and was hoping he would put the "permanent" tear duct plugs in that day. Wishful thinking! LOL. Because the first "trial" one slipped out within 24 hours, he felt it didn't give me adequate time to see if it made a difference; so, he inserted another one in the right bottom tear duct and made sure it was down farther. The "disposable" plug he put in that day slowly dissolved over 3 to 4 days. It definitely made a difference in the moisture to the eye.I have an appointment on Monday, January 19 again. I'm hoping he will decide to put the permanent ones in both eyes. I'll keep you posted on that.As far as my Rhuematologist appointment---I was suppose to see him this Thrusday, but they called and changed the appointment and now I won't get in until January 26. They wanted to make the appointment in February! I told them no-way. Either I get in as soon as possible or I would have to find a different one. Voila! At least I got in this month. Hassles, always hassles!!! LOL.


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## moldie (Sep 25, 1999)

I'm glad you got that second opinion and some answers Feisty. I know a lady who has fibro and all the symptoms of Sjorgren's as well, although nothing specific showed up on her tests either. It can be very frustrating. Good luck with your Rheumy vistit.


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## azvessey (Dec 23, 2000)

You may have to copy in the link as complete. http://metametrix.com/Publications/Fatty Acid Profiling/dosen't fit on one line here but http://metametrix.com/Publications/ does. If this second one opens, manually select the 'fatty acid profiling option'. It's a very interesting read.Cheers.Tony


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## Feisty (Aug 14, 2000)

Looks like I have Dry Eye Syndrome and Blepharospasms, according to the new Opthalmalogist. And it's getting worse. It's hard for me to do much driving---the uncontrollable eye blinking and squinting makes it hard for me to see properly and stay alert. The eye irritation is calming down with the use prescription eye drops, but the uncontrollable blinking and squinting is driving me crazy. The eyes are very sensitive to light, which triggers the Blepharospasms. I'm scheduled for Botox injections around both eyes on Feb. 20th. The Botox is suppose to paralyze the muscles and hopefully stop the spasming.If the Rheumatologist doesn't change my appointment "again" (it's only been changed by him 4 times now







), I'm scheduled to see him on Feb. 16th. I'm hoping he can give me a firm diagnosis of Fibro (it's been 20 years for me). If worse comes to worse, it may be the early stages of RA. I'll keep you posted.Perhaps we'll learn something from all of this, huh? LOL.I haven't been on the BB much these days. I'm finding it hard to use the computer because even the light from the monitor is too bright for my eyes. Sorry.


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## moldie (Sep 25, 1999)

Hi Feisty,I do have a mild case of this too. Here is a dry eye link. It does rule you out for obtaining lasik surgery, it seems, unless it resolves somehow: http://www.allaboutvision.com/conditions/dryeye.htm I can't wear my contacts for more than four hours at a time, and only wear them on special occasion as a result. I find myself sqeezing my eyelids tightly together a lot lately to try and get some more lubrication. When I used to go to the fibro meetings, they had florescent lighting that drove me crazy. I often awaken with dry eyes. It feels like something is in there, like an eyelash or a piece of fuzz. Doesn't matter if I take the Benadryl or not either. I think I must sleep with my eyes half opened. It gets worse throughout the day, especially with reading. I can't tolerate bright lighting at night. Right now, I can't stand the clock and television in the bedroom. I'm pretty sure it would upset hubby if I had them taken out though. After all, I'm the one who wanted the atomic clock and the flat screen TV in the first place.














Hope the Rheumy doesn't cancel on you again! M.


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