The picture is finally emerging of what's going on ... my CT angiogram was clear, thank goodness. So CNS Vasculitis looks unlikely (although there's always a chance it could be early stages, not picked up etc etc). PHEW.
So the most likely diagnosis is neurosarcoidosis. And now that I'm reading more about it, a bunch of odd little symptoms I've had for the past 4-5 years are suddenly falling into place, which I admit I'm finding rather exciting. Stuff like :
• Onycholysis (painless lifting of the fingernails from their beds)
• Loss of sense of taste and smell
• Loss of sensation in any body part (currently have a numb right arm, and the numbness is spreading to my jaw and back of my neck)
• Facial nerve involvement (I had a 6th nerve palsy five years ago, with no cause determined)
• Dry eyes
• Vision loss
• Muscle aches and pains
• Brain fog
• Nasty itchy blistering skin lesions associated with sun exposure
• Dry scaly skin
It is even often associated with fibromyalgia. Far out.
I'll be started on corticosteroids today or tomorrow. Hopefully only for 3-4 months this time No saying yet whether my vision will repair on steroids, but I'm hoping so! I think I've probably got the chronic form of the disease, given that I think I've had symptoms for at least 5 years, so it's likely to be something I'll have to be dealing with for many years, if not lifelong.
I've also informed my hip surgeon about all this, as being on steroids may have an impact on the stability of my artificial hip - he'll call my neurologist for a chat. I suspect I'll end up on calcium supplements. And I'll have regular vision checks, and MRIs.
Hope to get out of hospital by the end of the week, with any luck. Feeling pretty good, I'm just so relieved that it's probably not the fatal (if untreated) vasculitis.