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Hi -
I have been lurking on DEZ for about 5 months now and want to introduce myself.
Last May I began to have problems with burning and redness after computer use. I brushed it off at first but in the back of my mind I knew that there was a problem as my Mother has had problems with her eyes growing up - she always said that she had Sjogrens Syndrome.
In June I went to an urgent care clinic for what I thought to be bad pink eye. It turned out that I had herpetic keratitis and bacterial conjunctivitis and was successfully treated for both with trifluridine and azasite respectively. After the urgent care Dr saw me for the 2nd follow-up, he said that I was totally cleared. To which I responded that my eyes still hurt. He shrugged and gave me a bottle of artificial tears. My eyes then felt better until the end of August. I returned to the Dr thinking that the herpetic ulcer had returned but nothing. Then on to another Optho Dr who shrugged and gave me artificial tears. My eyes still miserable - burning, red, blepharospasms, pain - I went to Stanford eye clinic where a resident did a long silent exam,. said that my eyes were aqueous deficient and that I had Sjogren's. And to use artificial tears.
At this stage I began to do research on the internet about Sjogren's and was no less than horrified. Those were some dark days - all this and working full time and caring for a 2 year old and 6 month old. I had a small nervous breakdown that really put my family into crisis. All the while my mother is saying "Sjogren's is no big deal, it is totally benign" which I found utterly confusing from what I was reading EVERYWHERE. Ignoring Mom (which like most daughters is pretty easy) I proceeded to go deeper and deeper into a emotional hole awaiting an appt with a Rheum and a Stanford Corneal Specialist - Dr Chris Ta.
My husband accompanied me to the Rheumatologist at UCSF who listened to me, looked inside my mouth, looked at my eyes (without a slit lamp even!) and told me that I did not have any symptoms of Sjogren's - my mouth was wet, my eyes were irritated but wet and while she would be floored if it came out positive, she would run the bloodwork anyway. The bloodwork came back negative. At which point I requested a lip biopsy. She told me neither she nor any other self respecting doctor would give me a lip biopsy with my lack of symptoms. At this point I asked Mom when she tested positive. Her response "oh I never tested positive, I have problems with my eyes, so did Grandma and we always assumed that it was Sjogrens" At this point I began to scratch my head.
I finally got to my appt with Dr Chris Ta a Stanford who looked at my eyes, told me that they were totally healthy save for some very mild blepharitis and that there was nothing to do. He referred me to a Dr at UCSF who specializes in ocular herpes. I requested an appt at UCSF and was told that the next available appt was in a year.
At this stage I found DEZ and OMG! What a catalyst for change this site has been for me. For starters it helped me find Dr Michael Gagnon, who treats me with care and knowledge. If it weren't for his treatment, I don't know where I would be today.
Dr Gagnon diagnosed me with ocular rosacea and in doing so, my mother now knows that she has OR as well and NOT Sjogrens (she has since been tested for SS and is negative). So my mother and I are both seeking treatment at this time. Unfortunately for my Mom, here eyes have suffered from years of not being treated properly. They are sore, blood red, no eyelashes and she has a really bad chalazion on the one as a result of a recent infection. As for my Grandmother's Sjogren's, we will never know as she died several years ago. However, I believe that she too had OR or else just dry eyes from using Elavil for 40 years!
I really want to thank Rebecca for this site and for all of the caring and compassionate people that post here. You have made a real difference to me and my family.
Thanks, Gretchen
I have been lurking on DEZ for about 5 months now and want to introduce myself.
Last May I began to have problems with burning and redness after computer use. I brushed it off at first but in the back of my mind I knew that there was a problem as my Mother has had problems with her eyes growing up - she always said that she had Sjogrens Syndrome.
In June I went to an urgent care clinic for what I thought to be bad pink eye. It turned out that I had herpetic keratitis and bacterial conjunctivitis and was successfully treated for both with trifluridine and azasite respectively. After the urgent care Dr saw me for the 2nd follow-up, he said that I was totally cleared. To which I responded that my eyes still hurt. He shrugged and gave me a bottle of artificial tears. My eyes then felt better until the end of August. I returned to the Dr thinking that the herpetic ulcer had returned but nothing. Then on to another Optho Dr who shrugged and gave me artificial tears. My eyes still miserable - burning, red, blepharospasms, pain - I went to Stanford eye clinic where a resident did a long silent exam,. said that my eyes were aqueous deficient and that I had Sjogren's. And to use artificial tears.
At this stage I began to do research on the internet about Sjogren's and was no less than horrified. Those were some dark days - all this and working full time and caring for a 2 year old and 6 month old. I had a small nervous breakdown that really put my family into crisis. All the while my mother is saying "Sjogren's is no big deal, it is totally benign" which I found utterly confusing from what I was reading EVERYWHERE. Ignoring Mom (which like most daughters is pretty easy) I proceeded to go deeper and deeper into a emotional hole awaiting an appt with a Rheum and a Stanford Corneal Specialist - Dr Chris Ta.
My husband accompanied me to the Rheumatologist at UCSF who listened to me, looked inside my mouth, looked at my eyes (without a slit lamp even!) and told me that I did not have any symptoms of Sjogren's - my mouth was wet, my eyes were irritated but wet and while she would be floored if it came out positive, she would run the bloodwork anyway. The bloodwork came back negative. At which point I requested a lip biopsy. She told me neither she nor any other self respecting doctor would give me a lip biopsy with my lack of symptoms. At this point I asked Mom when she tested positive. Her response "oh I never tested positive, I have problems with my eyes, so did Grandma and we always assumed that it was Sjogrens" At this point I began to scratch my head.
I finally got to my appt with Dr Chris Ta a Stanford who looked at my eyes, told me that they were totally healthy save for some very mild blepharitis and that there was nothing to do. He referred me to a Dr at UCSF who specializes in ocular herpes. I requested an appt at UCSF and was told that the next available appt was in a year.
At this stage I found DEZ and OMG! What a catalyst for change this site has been for me. For starters it helped me find Dr Michael Gagnon, who treats me with care and knowledge. If it weren't for his treatment, I don't know where I would be today.
Dr Gagnon diagnosed me with ocular rosacea and in doing so, my mother now knows that she has OR as well and NOT Sjogrens (she has since been tested for SS and is negative). So my mother and I are both seeking treatment at this time. Unfortunately for my Mom, here eyes have suffered from years of not being treated properly. They are sore, blood red, no eyelashes and she has a really bad chalazion on the one as a result of a recent infection. As for my Grandmother's Sjogren's, we will never know as she died several years ago. However, I believe that she too had OR or else just dry eyes from using Elavil for 40 years!
I really want to thank Rebecca for this site and for all of the caring and compassionate people that post here. You have made a real difference to me and my family.
Thanks, Gretchen
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