The Dreaded Steroids

I am having a flare up of Transverse Myelitis, which was the condition I developed that led to my diagnosis of MS.

Ugh, what a bummer.

I am one of the lucky ones. Although TM initially paralyzed me, I responded to IV steroids and got better. Better-ish. It left me with lots of deficits, dysfunction, numbness and weakness. But some people never recover at all and are crippled forever. Some even need to be on respirators.

This scary stuff is caused by lesions on the spinal cord that strip the nerve cells of their protective coating, the myelin. It’s called demyelinating. Your level of illness depends on where your lesions are. My biggest one (yes indeed, I have an entire collection back there) is on my cervical spinal cord. That causes just sooooo many things to malfunction. Ahhh well.

An intravenous steroid, in this case Solumedrol (IVSM), is the thing that will calm the lesion down and make me feel better. But it comes with a price.

First, after a few days of steroids, I am, let’s see, how can I put it? A raving lunatic. No sleep, non-stop talking, non-stop activity. A VERY clean house. Let me tell you, this is not fun to live with. The one child (a 22 year old CHILD; oy) who still lives with me (who I am trying to pry out with a crowbar; does anyone want her?) just rolls her eyes. This will be my fifth course of IVSM in three years, so she is used to it by now.

Then there is the physical stuff. A hep lock in my arm for days, no showering, nasty taste in your mouth, potential kidney damage, potential bone damage, potential diabetes, aching all over like you have the flu and feeling like you have been hit with a truck when it is done. The first time I was on IVSM my blood sugar went so high I was on insulin for three weeks. Some people develop a ravenous appetite. Amazingly, I don’t. I actually lose my appetite. Cool.

But it usually does help, so there is that.

Maybe, as I am up all hours with steroid induced energy, I will write dozens of brilliant and witty posts for my blog!!! Now that is something to look forward to.

This is a short video related to Project Restore at Johns Hopkins, which is doing research to develop a cure for demyelinating diseases like Transverse Myelitis and Multiple Sclerosis. Alysse describes exactly what it is like to develop TM and the losses we experience when we have it.