Saturday, October 06, 2007

Going Back to Diagnosis and Treatment

I feel the need to write down a bunch of stuff about the diagnosis and early treatment just to get it down on for the book.

So, I get the first MRI and hear it could be MS. Then, on 9/17, I get the second MRI, including not only pictures of my brain but pictures of my cervical and therasic (sp?) spine. This MRI took about three hours and I got to listen to music during the spine pictures. I couldn't listen during the brain pictures. It was Elton John. I asked for Counting Crows but I was told they didn't have a huge selection. The radiologist was very nice. Christina waited in the waiting room to drive me home. We ate Wendy's while Ken picked up the kids and fed them dinner. (It wasn't convenient for John. Grrrr.) I now have a CD with a picture of my brain on it. I'm thinking of creating some sort of art project. Maybe project it onto a wall or something or develop a picture and cut it into little pieces to make a collage. Stay tuned.

Oh, the second MRI confirmed the MS diagnosis and showed old and new lesions on my brain, optic nerve, and spine. If there are all these lesions, how long have I had MS? I question EVERYTHING that happened before my optic neuritis started on 8/30.

I remember saying to my ex once that I was a very healthy person but it was weird that, whenever something was wrong with me it had to do with inflammation: tendinitis and lots of different inflammed muscle injuries, ulcerative colitis, carpel tunnel, costracondritis, etc. Were all those things because of MS?

I'm reading now that depression is disproportionately common in MS, more than any other chronic illness. Was my depression that was diagnosed after Ruby was born related to the MS?

I have ALWAYS been clumsy. Is that MS? A few months ago, I fell down the stairs while we were at an audio studio. At the time, I was mortified and joked with my colleagues that it was a good thing the President of the company wasn't below me or I would taken her out. Was that MS? I always have bruises from bumping into stuff. Is that MS?

What about the cognitive issues that can affect people with MS. Sometimes, I say the wrong word (e.g., "closet" instead of "coat") or forget where I put something. Is that MS?

What about the laziness? I mean, people who know me (and like me) laugh when they hear that I think of myself as lazy, but sometimes, I do. I can feel like I HAVE to spend the day on the couch sometimes when the kids go with their dad. Not emotionally, just recharging. Is that MS?

I met with a neurologist at MGH that I like a lot. It was sometime before the second MRI because he ordered it. His name is Dr. Tracy Cho. He is cute (not that that's the only reason I like him!) and he seems to think I am smart and interesting and worthy of his respect and answers. Kenny Chang was nice, too, but that is not always the case. Kenny Chang's boss, Dr. Teeth, as Ken and I called one of the neuro-ophthalmologists at MEEI, patted my hand and told me not to read so much because it would just make me nervous. He also talking to me in a condescending voice and, when I questioned something, said, "Don't you see?" I responded in what I thought was a completely appropriate manner: "No, Dr., I don't see, that's actually why I'm here! I work as a marketing manager, not a neurologist or ophthalmologist so this is not my area of expertise!" After that, he started talking to Ken who was with me. If he had a bubble over his head showing his thoughts, I think it would have said something like, "Well, she's a real B*&CH and hysterical, too. I better talk to the rational man with her. Maybe he can calm her down." Grrrr.

Ok. Is it more cognitive issues that I'm not sure if I already wrote all of this before but I don't have the energy to go look and see? :-) Whatever!

Anyway, Dr. Cho insisted that, before I select him as my primary "MS neurologist," that I keep my November appointment with Dr. Misha Pless, who is a specialist in MS, which is why I had to wait so long for an appointment. In the meantime, Dr. Cho is caring for me. He prescribed a second round of IV steroids (with no oral steroid follow-up, thank you very much) for my vision which was bad again a couple weeks ago. This time, instead of getting infusions in the MEEI ER (and seeing prisoners led in in handcuffs and shackles who got to bypass the long line), I got to go to an infusion clinic where people go for chemo. This sounds weird, but it was lovely! Not only were the nurses fabulous, but I sat in a lounge chair for a few hours, they gave me snacks, coffee, soda, water, juice, and my own remote to my own Direct TV monitor. I watched HGTV, Discovery Home and all these other channels I don't get at home anymore. I felt sick and worn out afterward, and had hot flashes, flushed skin, and pimples for a week afterward, but it worked and my eyesight improved so I guess it was worth it. I did tell the nurses, they should hire people to give us pedicures during the infusions. They could take a cut and make a mint!

I ordered delivery pizza and a cheeseless calzone for dinner. (I never do that!) The kids are watching Postcards from Buster (I miss everyone in Children's Programming at GBH sometimes) and we are waiting for the bell to ring. Am I just lazy?


  1. You certainly are not lazy (or, at least, not as lazy as I am--but then...that bar is set pretty low! ;-) But what on EARTH is cheeseless calzone, as my Italian grandmother rolls in her grave.

  2. I love the pedicure idea. And I miss everyone -- including you! -- in children's programming at WGBH, too. I should probably write/call them all to tell them that, like I'm telling you now...