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.
may this be the solution to your problem. Something fixable and being gone would of course be better! But most importantly - hope you get well soon and can go home
ReplyDeletebest from Tennessee
Bea
I hope the treatment works
ReplyDeleteI can remember you talking about your loss of smell and taste a couple of times. Here's hoping the drugs work quickly and you can go home!!
ReplyDeleteYou sound so upbeat, you crazy thing! I hope you're home soon to the healing licks of Miss Petal.
ReplyDeleteAll I can say is
ReplyDeleteYOU ARE A WALKING BLOODY MIRACLE!
How on earth do you get up every day.
I am endlessly gobsmacked by the innumerable possibilities for the body to fuck up.
Intelligent design my arse.
What can I say - excuse my passion.
I hope the steroids do the trick, although I know they're no picnic either. The list of symptoms is so mundane sounding. I think I've had all of those (except the numb part) over the last few years. Makes you think.
ReplyDeleteI'm glad you're going to go home. It's so much easier to rest there and I'd imagine you've had enough of hospitals for a while.
Thanks be for modern medicine!!
ReplyDeleteAnd thanks to you for keeping us updated on the info. Hooray for finding answers and hope!
Hugs and chocolate kisses.
I hope this treatment works, I will try to check in as often as possible, if you have updates. Lifting up your fingernails, that's generally a sign of something - not sure what, but now I know, I guess.
ReplyDelete