Sjogren's with Papilledema and Sarcoidosis in the lungs

[lisab]

I was diagnosed with Sjogren's Syndrome a little over one year ago after several months of struggling with swollen pillatid glands. A few months later, my vision started becoming blurry and I was diagnosed with Papilledema. My doctor at the time did not do a spinal tap and gave me Diamox with the assumption it was too much fluid in the brain. My new MD (bless his heart!) is much more thorough and after finding possible Sarcoidosis in lab work he ordered a chest CT. From the CT they found my lymph nodes are enlarged in my lungs and I have to have a biopsy. So now I'm facing a spinal tap and a biopsy of lymph nodes in my lungs all within the next few weeks. This is all really scary as I feel heathly but new things keep popping up! Anyone have similar symptoms? Similar tests? I guess I just need a little reassurance that this is all part of Sjorgrens and I'll be able to move on soon...

[Linda196]

I was diagnosed with Sarcoidosis nearly 35 years ago, by sub-clavian lymph node biopsy. Luckily, I'm one of the 10% with no lung involvement (so far) so I've never had a intrathoracic (inside the lung) lymph biopsy.

You may want to ask about holding off on the spinal tap, until the results of the biopsy either prove or disprove the sarcoidosis diagnosis, because papilledema can be a sign of sarcoidosis, and any intracranial edema (fluid on the brain) could resolve with treatment for the sarc.

There is a school of thought that uses sarcoidosis as exclusion criteria for Sjogren's, meaning they don't believe you can have SjS if you have a firm DX of sarc, but my docs still think I have both, so I can't say it's not possible.

[lisab]

That's very interesting that you mention that. My original blood tests did not show SjS though through a lip biopsy they noted that it was most likely SjS. I was having a lot of symptoms at the time - swollen pallatid glands, joint pain, dry mouth - so they assumed it must be SjS. My MD wants to go ahead with the spinal tap next week because he wants to find out exactly what's happening. Unfortunately, my previous MD did not do many tests and I have now lost significant amounts of my optic nerves in each eye. He is wanting to check everything to diagnose and try to prevent papilledema from returning otherwise I could likely start to lose vision permanently.