[deb b]

Good morning,

I am interested in hearing from anyone who has Sjogren's....your experience, symptoms, how diagnosed, treatment, what other conditions you have, has it affected any of your internal organs, etc......Thanks in advance for sharing!

Here is my experience; I haven't connected with my Neurologist yet about the diagnosis to see if there are other things to do from her perspective

I was diagnosed with Sjogren's this week by an eye specialist (Dr. George Papaliodis) in Boston, MA. My Neurologist, who follows me for CRPS, Erythromelalgia and small nerve fiber polyneuropathy, referred me for extremely dry, painful eyes that have progressively worsened over the last 18 months while on Restasis. A very, very dry mouth and nose are other symptoms I have. All other tests (many!) for finding underlying cause of the polyneuropathy have been pretty unremarkable to date, with the exception of a high ACE test (with no sarcoidosis) and a positive ANA. To say I was surprised with this diagnosis is an understatement, as I expected another normal result.

Although my Sjogren's antibodies are negative, I have virtually no moisture in my eyes (0 mm in one eye and 1mm in the other....no wonder why they feel like sandpaper!). He mentioned that of course meds, aging etc....are contributing to the dryness, but "he had no doubt" that I have Sjogren's, especially in light of my other conditions. Asking who started me on Restasis, he mentioned I should thank that person because without it, more aggressive treatment would have been needed. I have a call into my Optometrist!

Dr. P likes to move slowly in terms of treatment, starting with the most conservative and I respect that. My current treatment is to up the Restasis to one drop each eye 3x/day, instead of 2x and using lubricating eye drops daytime and gel at night. He also recommended Flaxseed. Revisit in 6 months or sooner if issues.

The Sjogren's Foundation has great info and I've started using suggestions for my mouth and nose. I had already been treating my dry mouth with RX toothpaste, sugar free lozenges and lots of water. I knew something was wrong when I needed 3 cavities filled this year, something I haven't had in 20+ years! A humidifier is on its way too!

Deb in NH