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Originally Posted by EE03
I was at my opthamologist the other day for a FU as he has been treating me for chronic dry eyes. I'm now on Restasis and this regimen is keeping the chronic blepharitis at bay, finally. He recommended that I be worked up for SS due to this and my complaints of dry mouth, which my peridontist found a change in my readings this year, indicating that this is becoming more of a problem. I have had bloodwork done for SS and that has come back normal, but the Opth. Dr. said that 30-40% of people with SS don't show up positive on the blood tests and still have it. This could also explain some of my other nerve problems aside from PN. Does anyone know which doctor I should bounce all of this off on as the Opth. Dr. indicated that he feels a lip biopsy should be done. I have my GP, neuro, or a rheumatologist to choose from, or perhaps I should consult all three, I don't know. If anyone has any thoughts about this, I'm all ears and would appreciate any guidance/info you can share.
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The rheumy would be your best bet for a proper Sjogren's work up. Your ophthalmologist is correct that many with Sjogren's are sero-negative (closer to the 40% then 30%). The lip biopsy is the definitive test. Your ophthalmologist likely did a schirmer's test as well. I have negative blood work for Sjogren's, but a very biopsy lip biopsy result. The biopsy looks to see if lymphocytes have infiltrated the salivary glands. There is specific criteria as to the infiltration for a Sjogren's diagnosis. There must be at least one focus (an aggregate of 50 or more lymphocytes, histiocytes, and plasma cells) within a 4 mm sq area for a positive result. There are several doctors that can perform the biopsy (dermatologist, ENT, and oral surgeon are the most common). It's just as important to have someone with experience do the biopsy as it is the pathologist that reads it. It is not a common procedure so ask about experience. I will be honest, many times the biopsy leaves a small numb area in the lower lip and sometimes a small knot as well. They can be permanent. I have both, but they are not bothersome.
Sjogren's can explain the dry eyes, mouth, PN and many other things as well. I don't know if your ophthalmologist told you, but using a small amount of baby shampoo on a washcloth and washing around your eyes can help control the blepharitis.
If you have any questions, ask away. I'll do my best to answer. If you are on the east coast, Johns Hopkins has a good Sjogren's Center.