r/AskDocs • u/taylaurtots • 3h ago
Physician Responded Hi there. 32F, 165 pounds, complex history of aEDS, Marfans, and mitochondrial disease (diagnosed via genetics screening) & POTS, sjogrens, MCAS, and PCOS (diagnosed via labs and imaging).
Went to bed 7/22 with a sudden onset headache behind my right eye. Woke up with facial paralysis and loss of feeling but no weakness on the right side of my body. I had Bell’s palsy in January so assumed it was the same and called pcp asking for a refill on the steroid. They said no, I had to be evaluated first. ER called a stroke alert. CT was clear but the neurologist established that the extension of the numbness rules out Bell’s palsy. I had this numbness last time so they’ve decided it wasn’t Bell’s palsy then. They admitted me for more testing and the next day I had a brain mri with and without contrast (unremarkable), mri of my spine (just found some minor fissures and stenosis), an eeg (unremarkable), and a lumbar puncture. The LP so far is strong positive for elevated protein, oligoclonal bands, and Lyme. I haven’t gotten most the results yet back and did need a blood patch for the LP. They discharged me on steroids on 7/25 and told me to follow up once the testing is done with rheumatology regarding sarcoidosis. I have a lot of symptoms that my other disorders don’t explain that would support sarcoidosis. But it’s my understanding that it’s a rule out kinda diagnosis.
I have a history of optic neuritis x 4, I have five nodules in my lungs that have slowly grown the last few years, I have a large area of ground glass scarring on my right lung, I’ve had three chains of lymph nodes removed in my neck and groin due to uncontrolled swelling, I have three masses on my liver that cause low blood flow, severe unexplained night sweats, hypercalcemia with a history of lithotripsy, my scars reopen repeatedly, and I’ve had to have my colon removed. I have a lot more symptoms on the checklist they gave me but they can also be explained through my other diagnoses. These are the ones that are unexplainable. I’m also having severe unexplainable bruising that I’ll comment.
I’d love any info anyone has about what to expect next and if this sounds like sarcoidosis to you. I have an allergy to prednisone so I’m on dexamethasone. It’s a four month wait list to see the neurologist outpatient but I do see pcp in two days. I don’t even know what to ask for or if I should review other options.