Not MS?

My neurologist sounded frightened  “I usually  get paged by my office for MRI results like this. I can’t believe I missed them. I don’t want you to see the slides.” She said that these were the worst set of slides of my brain and spine that she had ever seen. I know what my brain and spine look like in MRI slides. My brain has lots of old white ghostly scars from prior attacks. My spine looks like a mouse took bites out of a it like a piece of cheese. I did not want to imagine what these slides could look like.

So we did what we usually do, starting a five-day steroid treatment. What was unusual was that I had no response to the steroids at all. I didn’t get any better. This concerned my doctor, who was wondering whether the inflammation in my brain was due to something other than MS, like a rare brain infection or even lymphoma.  We got another round of five days of steroids. Still no effect.

The next thing I knew, my neurologist was checking me into the hospital for tests and treatment. The test was a lumbar puncture, not the most pleasant experience. Every time the doctor missed his mark,electric shocks like enhanced intererrogation coursed through my back. While we were waiting for the results, Lisa and I became more and more convinced that Lymphoma was a distinct possibility.  Always a dangerous cold comfort, Google told us that there was a connection between lymphoma and MS

The day after the lumbar puncture, a phalanx of doctors appeared in my room, giving us the news that the tests showed  no strange brain infection and that lymphoma would be incredibly llunlikely.  The good news was basically “you have really bad MS.”

My neurologist put me on a treatment called plasmapheresis, the use of a centrifuge to separate my red blood cells from the plasma and replace the plasma with fresh plasma without the antibodies caused by MS. The treatment took about an hour and a half, and you can only have it once every other day. I needed to have five treatments, so the hospital stay added 10 days, finally resting at two solid weeks by the time I was done. 

When people ask how I am doing, my big news is that I feel better, both physically and in terms of mood. I’ve had so many loving messages and visitors that my spirits have been buoyed above the highest wave.  One in particular, my dear friend Steve Toker, flew in from Dallas as soon as he heard that I was going into the hospital. An anesthesiologist, he’s a former college Rugby teammate. He spent the four days pushing me to work out as much as I could. When I first was admitted, there was talk about me doing not only the plasmapheresis treatment but also some days of inpatient rehab at the end. Based on my level of activity, I think that the movement within my team toward asking me to do inpatient rehab started to abate. So they let me take my new plasma and go.  Home now, my latest MRI is no better. “Really bad MS” remains my acute condition.  I have good days and bad days.The answer to the question “not MS ?” has met a resounding “NO” with extreme prejudice.  A big YES to more MS. 



One thought on “Not MS?

  1. Betsy Greenman

    Hi Gil Quality control here! Email came in for the new blog story. Explosives deleted about no positive MRI change. What a humongous effort to expend – yet at least the focus is clear.

    Thinking of you and Lisa and your Tulip weekend. Hope you enjoy funky LaConner and all the gorgeous fields of flowers. Try not to think of Tiny Tim tiptoeing through the tulips 🌷. That tune can stick with you so don’t think of it 😊😊👍 Lots of love Mom

    Sent from my iPhone



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