That would be about now, and last night I ended up back in the Emergency Room due to more sensitivity in my ears, as well as bladder problems. Embarrassing, yes, but it is what it is, and unfortunately it's just a part of it.
The on-call neurologist happened to be one of the neurologists who followed my episode during the summer!
Not only did she remember me, she even asked about my crested gecko, Leroy! This made me feel very trusting of her, as I know she truly listens to patients if she can remember my beloved pet that was briefly mentioned, 5 months ago.
As usual, I was poked and prodded. Did all sorts of neurological testing, had blood drawn, and an IV inserted. Due to fragile veins from vascular Ehlers-Danlos Syndrome, my first IV site blew out, and I had to have another IV cannula placed.
Assessments were thorough during this entire E.R. visit. It almost felt a little surreal when the neurology resident came to see me, and had already read my chart!
So what did the hospital say?
After 6 hours in the hospital it was determined I may be having a "Pseudo Relapse" brought on by a very mild infection. My nervous system went totally haywire this past week, causing many symptoms to flare up.
This is a very clear reminder of how careful I truly have to be. Even getting a common cold or sinus infection is enough to send my immune system rampaging, and attacking my brain.
The neurologist was then stuck with deciding whether I jump on starting IV steroids to slow potential disease activity, or take antibiotics to deal with the infection, and risk getting worse.
Meds are always quite a conundrum. We had to consider how the steroids would suppress my immune system further, which could allow infection to flourish, intensifying symptoms even more. On the other hand we had to remember how I went from having initial hearing issues, to being admitted to the hospital and rapidly declining, very quickly. This was after not getting the steroids I needed at the time.
The plan is a week of antibiotics, while we cross our fingers.
Hoping it's not actually the beginning of something more serious, but I feel like I'm in good hands if anything does go wrong.
I'll be laying even more low over the holidays. Tomorrow I head to Victoria to spend time with family, and will post updates if there are any changes. On the brighter side of things, Christmas is always an extra special time for me. December 25th, 2010 I experienced a Christmas miracle!
After 2 months of my entire right arm being paralyzed, I woke up and was able to move it again. So even though I am dealing with a lot of challenges right now, I'm counting my blessings and feeling very grateful.
Thank you to those who have reached out and wished me well, I appreciate you all so much and am sure I'll be okay no matter what happens.
Wishing you a Merry Christmas!
The photo on the left was captured Sunday July 14th, 2019 by Vancouver Photographer, Phil O'Donoghue. This was just hours after the hospital had turned me away, and just 12 days before the photo on the right was taken.
Saturday July 13th, the day before this photo shoot, I was turned away from the E.R., as well.
"Mild inner ear infection with lacrimal duct dysfunction" is what they suggested that day, after I reported sudden right-sided hearing loss. On Sunday I knew something was very wrong when all of my symptoms drastically shifted. The hearing loss reduced, but the world would spin at any movement of my head or eyes, and I could not feel the left side of my face or entire back of my head.
I know my body well, and reinforced with triage again Sunday morning, "I have Multiple Sclerosis and a vascular sub-type of Ehlers-Danlos Syndrome. I took my last dose of the medication Gilenya on May 31, 2019 and am at high risk of MS relapse. It is important we rule out neurological issues."
Alas, I was again sent on my way. I figured if the hospital thought it wasn't enough to keep me, then it wasn't enough to keep me from doing my work that day. The photographer I was booked to work with is one of my best friends, so I knew he would be understanding and helpful if anything got worse.
The photo shoot went surprisingly well despite the lack of feeling in my face, and I held it together alright for the day. Then 4pm came and while I was washing my face up after the shoot, the vertigo hit much harder. As I lifted my head from the sink, the entire world started spinning and I began throwing up.
The next day I still could not feel my face or head, and still felt sick from vertigo. Me being me (stubbornly devoted when it comes to jobs I've agreed to do)- dragged myself all the way out to the middle-of-nowhere, to work on a TV set. At the time I was committed to a very interesting background acting role, and was determined to finish my last few days on the show. After only about 4 hours, another performer who knew about my MS came to me and said, "Fiona. Go home. You can barely stand." (Thank you, Bon.)
Time was ticking, and I started mentally preparing for the idea that the breathing tube might not be able to be reversed. At this point it was up in the air if I was going home one day with an irreversible tracheostomy.
Each ward I was moved to (5 total) came with a unique set of challenges.
Maybe I'll share more on that another day.
Other symptoms I dealt with:
It only took 6 weeks to go into full relapse, from the last day of Gilenya.
This was after 2 months of carefully being tapered off of it.
I'm working on another post explaining where I'm at currently, and will share more pieces of this complicated puzzle soon.
...And I haven't even gotten to explaining the blood plasma transfusions, yet.
Some things resolved, some have not at all, and my entire reality is different now.
(PS. During that cool film booking I had to leave from, I was convincingly strong and tough enough to even wind up with a referral to an exclusive agency for stunt performers in Vancouver. This agency is "hard to get into, and even harder to stay in" and I had a definitive "in". While I really wish I could run with it- my body is definitely not made for stunts. Thanks again, Shaw!