Friday, May 25, 2012

Maybe you'll start feeling better if you stop reading WebMD

Yesterday was follow up visit with my neurologist. I have been attending her office every 6 months for the past year and a half. Yesterday was a big step in our relationship.

I have been given the all clear to now only see her every year, unless I relapse. This is so exciting.

My only real symptoms are numb fingers and numb toes and bi-lateral spasticity of my lower limbs. This is pretty awesome. Now that I'm not working she is concerned that I am not getting enough exercise and wants me to walk, at minimum, 1 km per day, to find some instruction in yoga and pilates, and to consider weight/strength training for my upper body and core.

Also, we have agreed that I will have an MRI in March or April of next year to see what is going on as she is supporting my decision to go off Copaxone.

I'm not going off Copaxone because it was horrible. I am going off of it because it is a constant mental reminder that I am sick when I don't feel sick. I'm also tired of being bruised and sore in inconvenient places. Mostly, I'm just really sick of being sick.

So, we've agreed that a one year break from Copaxone is fine. If there is no change in my lesion load next year, then we'll talk about Copaxone or see if Gilenya is covered by the provincial drug plan or see what else is on the market. If there is a change, then getting back on a drug is really my only course. I have had no change in my MRI since diagnosis, so anything that happens after now will most definitely be because I went off the drugs.

So, in the grand scheme of all things MS, with 1 being "meh" and 10 being "someone kill me and put me out of my misery", I'm a 1. Maybe even a 0.5.

I am extremely fortunate that my version of MS is turning out to be more of an annoyance than a life destroying disease. I have done nothing to deserve this, unless you count listening to the best advise the doctors had for me and doing what was suggested by them as "doing something". I don't know how long this will last, and by this time next year we will find out of my decisions worked out.

1 comment:

  1. I use for yoga and pilates full length classes, plus he practices with me. No way could I get him to a yoga studio but he has a very good practice at home.

    So glad things are going well.