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!
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.
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.
