Off I went armed with this question of my diagnosis to Rheumatology, Infectious Disease, and back to Ophthalmology again. I started a USB flash drive of all my medical records organized by type and date as well as a book of medications, health history, and symptoms with dates. Basically, I learned to become a better historian and rather than trust each doctor to have the records they needed, I would bring printed copies of anything that I thought would be relevant to them.
Infectious disease ordered more labs and after several visits basically told me that he could not point to a virus or infection to explain my symptoms.
Rheumatology said they didn’t believe I had a current Rheumatological condition, but that I should monitor a few things including the potential for developing future ulcers on my finger tips and that I should return if any new or unexplained symptoms arise.
Opthamology told me to continue the meds for my eyes and that they wanted to monitor me for vision loss every six months or so. The meds were working in that I wasn’t experiencing vision issues, but when he looked into my eyes, he was seeing no improvement.
With all this knowledge, I returned to the MS Specialist with, well, nothing. Apparently it was the information she needed, and on Nov 4th she spent an extended amount of time with me, my husband, and my parents to go over my MRI scans individually and to discuss what she believed was going on. My NMO (aka Devic’s) test came back negative, but we had been cautioned in advance that it was possible to have a negative result and to still have NMO.
The short version is this: I most likely have MS; however, she cannot completely rule out NMO. Based on this new and scary information, it was recommended that I consider treatment with Rituxan (Rituxamab) as it is a medication that should adequately address both situations.