Clarity is rare

I went to see my neurologist this week for my bi-annual appointment. A couple of weeks before that meeting I had another Magnetic Resonance Imaging (MRI) of my brain and cervical spine but this time with a brand new MRI machine. New technology that provides much more detail.

She showed me this new image alongside the previous image and the definition was dramatically better. I could see with my own layman eyes where the damage is. So much easier to detect. She showed me a section of my cervical spine about two or three inches long that has lesions or is scarred (due to MS) and that is the reason I’m having increasing difficulty walking. And to my surprise the reason for my feet turning red / purple and going cold all the time. My GP told me it was Raynaud’s Disease (he did not have the benefit of that last MRI) but my neurologist said that it’s not Raynaud’s; it’s because of the damage to my cervical spine. Lots of signals pass through that damaged cervical spine – it’s hardwired. I wish I could turn on the wi-fi and communicate without wires – wouldn’t that be awesome.

For some reason I feel better that I know what’s going on even though it’s not great news. But it takes away the not knowing part. And it’s kinda reassuring that there is some definitive answer for what’s happening. MS creates lots of fog which makes defining anything very difficult.

Multiple Sclerosis at least in my eyes causes me to second guess everything that’s going wrong with my body. I always wonder is that because of MS or is it something else. In the Raynaud’s case I’ve learned that it is MS and in a way that makes me feel better. It shouldn’t but it does.

You may think that is a weird reaction to that news but it represents a little more clarity in how my MS condition surrounds me. I’m discovering that MS is not one disease it is many. It’s my cold tingling feet, my tingling legs, my bad balance, my weakening legs, my blurry eyesight, my tingling uncoordinated hands, my wonky memory, my constipation, my weak stream, my burning foot, my burning leg, my intermittent fatigue, and my constant worry – what will be next.

It really does feel that I am surrounded and all those peripheral feelings, pains, distortions, sensations that are my current collection. A collection curated by MS.

It’s weird to me that I would come out of my neurologist appointment feeling better than I went in but I always do. We had a good conversation and I left knowing what I care about. It’s not just the conversation itself it’s the fact the conversation happened at all. I am very fortunate.

If I was a teacher of neurology I’d teach them how to talk to someone. How to make a scared person feel understood and listened too. How to show empathy and be responsive to concerns. I’ve been with my neurologist for over 18 years and if I said we were friends I’d be lying. But I have very few friends I could have those kinds of conversations with. It’s a tool in her tool belt and in my opinion it’s her best tool.

It’s part of how I get clarity and move forward.

Ahimsa

Note: I have had many many MRI’s and over the years I’ve become more aware that I’m not comfortable in that loud, long, narrow, restricted tube. I’ve railed on many times on this blog about it and that I’ll never do another one. However this time I asked my neurologist if there was something she could prescribe for me to be less antagonistic towards this test. And she did. I should have done this years ago – way way better.