Sjogren's DX Here-

[Lucy]

I had an appointment this a.m. for the report of a lip biopsy I had done two weeks ago. It was positive for Sjogrens. I am not surprised and have thought this for some time now. I'm probably the only one who did think so, because my bloodwork came back negative and that doesn't help matters.

I am fine with the DX because I have known it for awhile now. Having someone acknowledge it is another matter. I don't see any big changes in my routine but certainly will be following up further with the rheumatologist. I need to also see a neurologist. Docs will be able to relate to this hopefully. I am fortunate that my ophthalmologist does work with me and has listened to me. He doesn't necessarily believe me, but will try my suggestions for treatment. He and I have a seven year history including two sets of surgery, all of which made problems worse. This DX will help explain some things.

My eyes are the "focal point" of my life and have been for years. Many days I'm just driven to bed with icepacks from trigeminal neuralgia pain. I'll bring to the board any treatments suggested to me.

[Flick]

Hey Lucy,

Glad to hear you've found peace with your diagnosis. I'm always fascinated by how people seem to know their own bodies so much better than anyone else does, including doctors and specialists.

So do you think having LASIK exarcebated your dryness or that it wouldn't have made much difference anyway in the long run? Also, do you have problems with dry mouth?

Hopefully being diagnosed with allow you to try some new treatments. Good luck.

[SusieD]

I wonder this too - many docs wont consider even testing for this unless you have the dry mouth aswell, do you get this?

Take care.

[Lucy]

Flick:

So do you think having LASIK exarcebated your dryness or that it wouldn't have made much difference anyway in the long run? Also, do you have problems with dry mouth?

Flick, I had lasik almost 7 years ago. I do not know if Sjogren's was in place prior to the surgery or not. I do know that LASIK caused me more problems than any one person should be subjected to! From my records, I had a low Schirmers prior to lasik and, ideally, should not have been lasered. Without LASIK, my left eye would not be the mangled mess it is today. I probably could still be working. That being said, I know the LASIK did not cause Sjogrens or vice versa. I would be much better visually and dry-eye wise if I had not had LASIK.

I have dry mouth, also. Have always had a cold drink (water/diet soda) in hand as long as I can remember. However, the last 3 years I had had numb lips. Now, try and explain that to ANY doc. Let alone try to tie that into bad lasik results and they just give you the look. Eye drops/goggles/scleral lens and lip balm are my mainstay along with liquids. I have joint/muscle involvement also.

Susie- I hope my answer to Flick answers your question as well. I have seen several docs from main medical centers and I don't believe one ever thought of this.

[Lucy]

Whoa, Trigger!

To you nice folks......before any more time elapses, I will tell you I went to my rheumatologists office today for a follow-up visit to my initial one. He said: "oh, your lip biopsy was negative." I remarked: "well, the oral surgeon told me the report was positive."

Rheumy's PA went on to say.........."we don't want to diagnose with something you may not have.......blah, blah..........." Apparently, the oral surgeon read the very same report as positive. So--who to believe? I'm sick of it all and they can "talk amongst themselves" while I am verklempt and don't care what the DX is. I will continue to see my GP, ophth, orthopedist, allergist on a regular basis. They can provide all the care I need.

My lip biopsy had inflammation in the cells and that apparently is the indicator. Enough for the oral surgeon, who did the biopsy, whom is an M.D.. Not enough for the Rheumatologist's PA. Go figure. Without me going on about my stuff, I have about 90% of Sjogren's symptoms. Leading the symptoms is the EYES. Nuff said.

PS. The post is for a disclaimer (?) reasons. This almost reminded me of our lasik surgeons claiming lasik did not cause dry eyes and to pretend not to know what we were talking about. Let the docs argue if they must.

[SusieD]

Thats pathetic.

[kakinda]

There's a tendency to over-DX sjogren because that's well-known territory (not because they know how to treat it either), i was actually surprised to see it confirmed....
If i remember well, you had neurological trigeminal issues, that alone could justify some problems you're having... and then if you had lasik on top of it.... Be sure to mention all those problems to a good ophthalmologist.
I had this too (I underwent trigeminal surgery due to constant trigeminal neuralgia) in some other way, people who had lasik also suffer from neurotrophic dry eye (loss of superficial sensitivity... doesn't mean it doesn't hurt when you have an ulcer but just that the nerve isn't working correctly to ensure protection, i.e. lack of neurotrophic factors required to ensure superficial eye health, NGF, SP, etc, etc).

Before I had my neurotrophic diagnosis confirmed (something i had actually diagnosed myself -since i knew the possible impact of cutting one nerve), i as diagnoses Sjogren, rosacea, several types of blepharitis, many infections and stuff like that, etc, etc...

See Sjogren causes neurological disorders... but other things cause neurological disorders...diabetes for instance... then neurological disorders may cause dry eye because the cornea and the glands are the eye are but one big "nerve" functional unit... if neural info is not passing thru then you're likely to have DE issues.

i have lots of symptons in common with sjogren, rosacea, blepahritis, diabetes, etc... too... but that doesn't mean i suffer from those.

take care (listen to your eyes...)
K

[Lucy]

Just an update to this thread. I saw my ophthalmologist today and had a cauterization. He saw the pathology report and agreed with the oral surgeon telling me it was positive for Sjogrens.

He really was baffled by the rheumy's PA telling me the report was negative. I guess he did not have his reading glasses on that day. For two M.D.'s to tell me the report was positive and then a PA from another office trying to tell me it was negative is a big stretch. The report was the very same for each doc. I guess the PA in the rheumy's office can call it whatever he wants.