Before my Liberation I desperately scoured the forums and blogs searching for someone who had been treated who "looked" like me. If I could find that elusive 40 year old woman, with RRMS, EDSS of 6.0, who had mostly motor involvement, not currently on any disease modifying drugs (DMDs), treated with only balloon angioplasty, it would be my crystal ball experience!
Alas, my twin out there who blogs or diligently fills out her tracking thread does not exist. I was on my own. This was not really a surprise to me. After all, I have many friends with MS, and none of us look anything alike when it comes to our symptoms, drugs of choice, length of disease, hair color, etc.
I promised myself that once I was Liberated I would keep this blog for anyone who thought they might see themselves in ME!
So in the past 34 days what's really been happening? In a nutshell, there's been a lot, and not much going on, all at the same time!
-My feet and fingers have stayed consistently warmer.
-My balance that was rock solid for 6 straight days, is not so consistent anymore. Pre-lib it was consistently bad. Now it is inconsistently good. Confused? That makes many of us!
- Fatigue might be a little better. It's hard to quantify without spending my whole day monitoring it. And I have waaaay more important things to do than that!
- Still have only choked once in 34 days. And that was at the end of a very long, busy day. So I'm chalking (choking?) that up in the win column.
-Spasticity in my legs is the same. In fact my left hamstring is giving me a little more discomfort than before. Nothing a little heating pad action can't fix, though.
- As the weather gets warmer, I will be watching and feeling to see if the heat gives me as much trouble as it has in the past.
Other than that I still feel like the woman I was 35 days ago. I still have MS, still use my cane and Segway, still try to pace myself throughout the day, and still have to abort activities that I would have liked to accomplish because my body has just had enough.
The biggest difference is my outlook. Dr. T said in the AP article that, ""It's a marathon, not a 100-yard sprint." I was so hoping that he was wrong, but as usual I think he is right on.
Still, my future has not felt this promising in 20 years. When I have a really bad day I don't automatically think to myself, "Uh oh, you're progressing or having an exacerbation, woman."
Instead I wonder if I have possibly restenosed. What a crazy, but exceedingly more pleasant, and fixable possibility!
There have been discussions on the CCSVI forum at thisisms.com about "placebo effects" and people only sharing the good stuff. I do not think that my 6 days of excellent balance was an illusion, or even wishful thinking. I also readily admit that no amount of optimism on my part has compelled my body to move any faster than it is willing or able to go.
While I will admit to some frustration at the pace of improvements, I really can't complain. I now actually have the possibility of improving! And if I do complain too much, you are all welcome to come over and smack me upside the head!
One last thing: I got an email from the producer of the TV interview. It will not be airing this week. She mentioned something about holding it until the Buffalo study is released at the end of this month. That will only make the story bigger, so I'm o.k. with that!
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