15 December 2013

Listening To Your Body: MS Medicine Changes


MS, the invisible condition. When it progresses rapidly, it's hard to 'prove', people don't readily understand or may not believe that someone is suffering much more than it seems.

The results of my first yearly MRI comparisons are in. Whether it's bad news or good news depends on how you see things. I knew the results weren't going to be 'good'. I know I'm getting worse. Much worse. In only about two years the change is dramatic.

He starts with the MS version of  'good' news. My brain is what the neurologist considers stable. "Three new lesions" he says, "we consider more will appear. Three is within normal expectations." I know I've been losing more words, mispronouncing and slurring sometimes, but not extreme, and my mental faculties are still sharp, I had figured on the results. "Yes, the thoracic, though..."

Lets get to it. This is what I wanted to know. My legs are quickly losing function, and sensory ability has been whacked out beyond all recognition for more than 6 months. This is why, when he wanted to get MRIs of the brain and cervical spine I said no and requested the brain and thoracic instead. My hands, though numbish and weakening, are much more stable and able than my legs, I want to see the thoracic first. He agreed.

He looked at his screen and back at me, we have that rapport now, he finally 'gets' my understanding, so he reads it word-for-word from the radiologist report and I nod. I knew it, but hearing it is another thing. "Significantly more damage, so much he's not counting and he calls it an 'extremely impressive amount of progression', so... not good."

But it IS concrete confirmation of what I know. To me, that is good. I never believed I was in the Relapse-Remitting type of Multiple Sclerosis category. I tried the therapy approved for the course in good hopes, but to no avail. I'm most likely a progressive type for which the drugs on the market don't work. "The Copaxone isn't working for you." and he outlined an aggressive therapy with a couple of scary drugs I'd already discounted from my willingness to try.

His face tells me he knows where my brain was already going, he did his doctor bit and made sure I understood options. I agreed to go along with the blood test to see if I was compatible with the infusion therapy anyway, and told me, whatever my choice, I needed to be off of the Copaxone for 30 days if I wanted to start and was a candidate.

I'm not going to go over side effects. In reality, it boils down to this:

Am I willing to sacrifice the health of my brain, heart, liver and/or kidneys to save my legs? Am I willing to risk shortening my life to *maybe* climb mountains?

The answer is no. Hell no. Am I willing to research and seek alternative therapies? Yes. Am I willing to treat myself well and go as hard as I can for as long as I can? Yes.

Am I doing the right thing for me? Yes.

I quit Copaxone on Thursday, after 1 year and a month. I'm keeping track of the differences I feel being off of a daily injectable drug. Listening to myself.

After all, I am the only one who knows what is best for me. I have listened to the feedback my body has given me all of my life. It led me to a quick diagnosis of this awful condition. It will lead me through it.
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