So much has happened, both fantastic and a bit not so good. When that happens I don’t always know how to assimilate it all, and thus, stay silent. Here’s my update….
First, for the awesome part. Over a week ago I had an appointment with my neurologist. Luckily, I snagged a cancellation, found a drive (2.5-3 hours each direction) and saw him in person for the first time in 2.5 years. I wanted to connect about my treatment, have a neuro assessment, plus if time allowed, measure the maximum distance I could walk.
Well….I walked 150m! It was all on my own, no walker, no grabbing walls, no staggering, no leg dragging, no resting, and it was on terrain I’d never walked before (new terrain is typically terrifying for a MS brain, and often body function disintegrates).
My MS neuro, Dr. Anthony Traboulsee (yes, I have permission to use his name publicly) walked beside me pushing my wheelchair in case I needed it. We chatted lightly as I walked (felt SO good being at eye to eye level), and if I were to ever relapse again (hopefully NEVER!) we might consider giving me the same chemo I had in MX (Cyclosphomide) instead of high dose steroids (Methylprednisone). Cool.
After the walk, I think our combined astonishment at the distance, we didn’t know quite what to say except ‘wow’, and grinned ear to ear. I’m so grateful of his support of my wanting to try anything and everything to try and get better. I adore him.
I do not remember the last time I walked that far. Years. I felt pretty balanced when I walked, focused and walked until I knew I would lose feeling from the waist down; that’s my queue to stop.
I have been bursting with excitement to share this milestone with everyone for the last 10 days, but held back as I wanted to make sure I could still walk this week, plus I wanted Dr. T’s report on the consult.
My new EDSS is 5.5! This is amazing and down approximately 2-2.5 points from last year which is unreal. Here’s a link to understand the scoring for those unfamiliar with it: EDSS
My 25 foot timed walk was 6.6 seconds, but since I couldn’t walk 25 feet last year I have no time difference to share 😉 It simply felt very fast for me.
Second, the not so positive stuff was a return of two symptoms. The first one was a re-awakening of my bone pain. It was initially just at night, keeping me up, writhing, and then began to ‘infiltrate’ my daytime. It’s a tough type of pain to control. I can only ascertain it’s my bone marrow working hard to produce cells and rebalance my body’s immunity.
The other thing that popped up again two weeks ago was extreme distension of my abdomen, upper abdomen pain, some swelling in my feet/legs and quite a bit of water gain. It’s super uncomfortable and mentally disturbing.
I was told to go to the ER by my doc’s office, but couldn’t face the thought of more IV’s, tests, poking, proding, etc., so I kept an eye on it (although not hard to miss as it stuck out so far ;-). For sure if it got marginally worse, I would have no choice, but to go to the ER.
LUCKILY, these last 3 days the issues have decreased a lot so I’ll assume it will fully resolve. If I could have stuck a needle in my belly to suck out the fluid, I would have done it. Dang, this recovery period is tough at times for me. I knew there were going to be up’s and down’s. It’s hard mentally though to keep a grip on.
I’ll chat about my crazy science project of a hair re-growth situ in another blog post (haha).
This video was my first attempt at walking outside, with no walker, since my neuro visit 10 days ago. Super encouraging!
Click here for video: walking on April 28th.
Here’s a pic of my belly at the start of it (I know, it’s gross)
Happy Pic Post Neuro Appt