Archive for November, 2012

Some of the trappings of neurological rehab I’ve collected over the past two years.

Annual scan

Today is the two year anniversary of my first MRI. What an auspicious thing to celebrate. I haven’t posted since last year at this time because things just continue to improve and it feels like my story has become rather boring. Boring in a good way. Yesterday I had another scan and saw Dr. Corboy. I don’t have the official report yet, but the short story is my lesion is slightly smaller and there are no new lesions.

Made for walking

Last week I found a pair of shoes in the back of my closet that I haven’t worn in about two years. They’re slip on’s and the heel is just high enough that I wouldn’t have pulled them out to even try wearing them since I had the big attack in January 2011 and lost my ability to walk. I remembered I bought them in Wisconsin in December 2010 when I was there after my visit to Mayo Clinic in Rochester, Minnesota. I specifically bought shoes on that trip because I was having trouble using the ones I had packed. When I found the shoes last week, it took me awhile to remember why those shoes worked when my other ones didn’t at that time: it was because it was physically difficult for me to tie my shoes. So at that point at the end of 2010, my fingers weren’t working very well but my leg and foot were fine. I had forgotten about the tying and buttoning issues.

Fast forward almost two years. My foot still doesn’t quite do what I want it to, but I don’t think twice about tying my shoes or buttoning my shirts. Not only that, I’m feeling optimistic enough about my recovery in walking that I put those shoes on and started practicing walking in them, using some walking sticks to make sure I didn’t twist my ankle. (Notice that I used walking sticks for this practice; I left my walker, four-bottom cane, regular cane, and two ankle braces in storage!)

Highlights from the last twelve months

In addition to collecting enough physical therapy gear to start my own clinic, here’s what else I’ve been up to since my last post:

  • I started a new job and work 40 hours per week.
  • I’m back to mousing left-handed (my dominant hand) about 60% of the time.
  • I’m back on my road bike, clipped in, and riding for an hour at a time without resting.
  • I ride my bike to the gym for Pilates or some other workout a couple of times a week.
  • I take fewer naps than my husband.
  • In one weekend I did an hour-long road bike ride on Saturday and went stand-up paddling on Sunday. (Nice testament to my endurance and sense of balance!)
  • I’ve been back on the tennis court and can hit and move better than I expected. I’m running out of excuses for my lame forehand.
  • I’m doing gait training at the Boulder Center for Sports Medicine and can do short stints at jogging. I have a goal of running a 5k by next spring.

What I’m still working on:

  • Typing with my left hand – it still gets cramped up and it’s difficult to type fluidly for any long period of time.
  • Shoulder and hip stability – that deep root of my shoulder and hip are still wobbly and unreliable at times.
  • Balance while doing yoga – I recognize what I’m trying to do is tricky for many who don’t have any holes in their brain, but I’m still stubbornly trying to get it right.
  • Walking without a perceptible limp or adaptation, so my left side does effortlessly what my right side does effortlessly.
  • Left side fatigue. Some days the left side of my back is just tired, in a way that my right side never feels.
  • Response to being cold or emotional or tired – these conditions all exacerbate my symptoms. The only remedy is to rest and not fight it.

Other crazy developments:

Today I talked to someone else who has a Balo’s type lesion. It’s like finding a needle in a haystack, considering how rare it is to see Balo’s lesions. It was really great to connect with her. Unlike me, she has 13 other lesions and oligoclonal bands in her spinal tap and was diagnosed with MS immediately. Her Balo’s lesion only showed up recently, and her doc hasn’t seen anything like it before, so she doesn’t have an official diagnosis of Balo’s. My doc saw this woman’s scans and said, “Yes, that’s Balo’s.”

She’s going to share her scans with my doc, so the radiologist can publish a report about the few instances of these scans they have seen. It’ll be good to get more information out there. As I told her, we’re rewriting the story of what Balo’s is, and it has a happy ending. One thing that changes for me is that I thought Balo’s, by definition, was something apart from MS. My official diagnosis is Balo’s, not MS. Adding this woman’s scans to the picture adds to the picture, since she has MS and a Balo’s lesion. Just when I thought things could be predictable… I should have known better. The fact remains that I have only one lesion, no OGC bands and no diagnosis of MS.

My treatment plan

My medicine is healthy food, low stress, exercise and rest. Most days I take a multivitamin, fish oil capsule and Vitamin D capsule. I continue to read about the connections between leaky gut, inflammation and auto-immune diseases, so I’m sticking to my new diet that’s working well for me: not much gluten or dairy, lean meats, lots of fruit and veggies, and very little processed foods. I’m also managing my stress levels and getting plenty of rest. I’m lucky to have a job I love, which allows me to work from home four days a week. I meditate occasionally and do yoga once in awhile. If I have to have a lesion in my brain (which apparently I do) I feel lucky to be on the path I’m on.

Assuming nothing dramatic happens, my next scan and doctor’s visit will be in November 2013. After that, I’ll see the doc (but no scan) in 2014 and have another scan and doc’s visit in 2015. Fingers crossed.

One more thing

I’m thankful for the people in the online communities who share knowledge and support each other. I’m always happy to talk to anyone going through this, especially if you have a Balo’s lesion and are uncertain about what to expect. I want to help spread the word about what this looks like so future patients don’t have to experience so much uncertainty. Thanks to Mandy in Arizona for starting the Tumefactive MS Facebook page and aggressively campaigning to expand the TMS network. There was a time when the docs thought that’s what I had, so I can appreciate the need to share knowledge about it.


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