Update on my never-ending saga lol

I have an appointment with a Neurologist…April 5th…my 20th anniversary. I am SOOOO hoping that brings good news for me!!

I had my bi-annual eye dilation for my Pars Planitis (Uveitis) today. While there are no changes (YAY) I am showing signs of inflammation (highly light sensitive today) so I am to start a steroid eye drop & an OTC eye drop. I also officially have dry eyes now. When I was first dx with SJS I presented with severe dry mouth, fatigue & pain. My Optometrist did a tear test on me today and she said my tear film was extremely thin. Eye Dr wants me to start fish oil after my surgery on 3/23 (for dry eyes) because it can thin some people’s blood. And I was told today that some of my vision symptoms are neurological as well.

Please forgive my ignorance, but is developing a new symptom of SJS after you are already dx an indication that SJS is progressing? I will be dx 1 year next month and TBH, I feel like this disease has TOTALLY taken over my body!! I feel like I have been hit extremely hard really fast?!?!? This MIGHT be in part due to the poor medical care I have been receiving from my original rheumy!

Well, that’s about it for now.
Hope you all have a great evening!


It might just be because of that, Limarie!

I know, it sometimes feels like your body gets possessed by these invisible illnesses! I’m a woman possessed myself … LOL

Good luck with everything.


Thanks so much Seenie! Like I said in my original post, I haven’t been dx a year yet so I still have A LOT to learn about this roller coaster ride. And right now, I really don’t have anyone to ask to get any answers.

I appreciate the well wishes!


During my appointment with my PCP on 3/8, she checked my Vit D level. I had been taking 50,000 IU once a week for the last 3 months, and I had taken my last pill on 2/28. Received a call today saying my level was low, so she is calling in another round of 50,000 IU to be taken once weekly again. And to have my level re-checked in 6 months.

2017 makes the 4th year I have struggled with keeping my Vit D level in the normal range. I know vitamin d deficiency and autoimmune disorders go hand in hand so I fear I am going to struggle with this for the rest of my life. I worry about my bones. I probably need a bone scan to see how strong my bones are.

That’s today’s update.
Hope everyone has a great weekend!


If you put ‘progression of Sjogrens’ into the search section top right of the page, then it comes up with a few discussions- you might not get any answers but at least you can see that you’re not alone, and also that it varies so much with everyone.

Thanks so much…headed to do that now!!