Atypical Multiple Sclerosis

Okay, so back to 2006. It was autumn 2006, a good year and a half had gone by before I was diagnosed with multiple sclerosis, primary progressive multiple sclerosis. Well, considering that there is no definitive test that diagnoses Multiple Sclerosis, my docs said that even though I look like primary progressive multiple sclerosis they would keep looking for definitive answers.  Mainly because I was atypical. Atypical chronic progressive multiple sclerosis that looked just like ppms.

For me, it didn’t matter whether it was ppms, atypical ms, or anything else. At that time it seemed like we were all splitting hairs. I was spiraling downward out of control. Just throw me a life preserver. And they did via five day solu-medrol treatments every three months or so. I had three courses of these treatments.

Solu-medrol was great. I got such a rush from these five day treatments. It lasted for about 8-10 weeks before I noticed a backslide. Only the backslides felt more like avalanches. My symptoms reared their heads like a herd of angry lions waiting to pounce on an intruder. I didn’t just take a step backward, or even a giant step backward. I plummeted like snow during an avalanche.

So the docs would set me up with another solu-medrol round. I kinda felt like an addict. I would get this rush of energy, improvement of all my symptoms then the heavy crash. I even had the track marks considering solu-medrol was dispensed intravenously. 

During the last dose, the docs informed me that they couldn’t continue to treat me with the steroids like this. Solu-medrol was a temporary fix until they could get another option approved by my insurance. 

Another option, another longer lasting option. Hmmmmm. What could this be?  Well, I knew already. The docs mentioned it before. CHEMO. Cytoxan. I needed a year of treatment without any sustainable results before insurance covered the expense of cytoxan.  

I really am lucky to have these docs. They were able to keep me going for a year so that the insurance would cover the treatment. It seems modern medicine is really a chess game. A bureaucratic machine that plays with the lives of the sick and ill. Well its not only their lives but all of the people who surround the ill. This makes me angry everytime I think about it. I realize I can’t be helpful if I’m angry. So I need to focus on things I can do, things in my control. Anger is not really a helpful emotion.

In that year 2006 to 2007 I had to learn how to live with ms, how to live with my family while I have ms. This was not an easy task. I was battling my own demons, my thoughts about how I used to be and how I still wanted so desperately to be the person I once was. Each step along the way I seemed to have lost a bit more of me. My physical body was deteriorating while the meds were degrading my mental body.

And the biggest adjustment was that each and every day was different. I went to sleep one way and woke up not knowing how I would be that day. Stress, weather, progression of the disease worked against me. I think that this is the hardest part of ms. Don’t get me wrong, the severe spasticity, vertigo, fatigue, etc of ms is difficult to deal with. But you can deal with those issues once you stop fighting the expectations of what your life should be, should have been. All the ‘what ifs’ and ‘should’ves’ will kill you in the end.

The trick is learning to live with atypical chronic progressive multiple sclerosis that looks and acts just like primary progressive multiple sclerosis. I had to come to the realization that this is the way it is, this is my life as it is, face reality then embrace reality. No, I don’t mean be happy or glad or rejoice because I have ms. I mean realize that there still are many more good things in this world than not. 

My husband stands by side, going through this disease with me. He sees me as the person he has always known. Not any less of a person. In fact he sees me as stronger and better than before ms. I get to watch my son grow up. WOW! If it stopped at just those two things that would be a life worth living, but the list goes on. I am able to appreciate and experience so much of this world that I can’t imagine not being where I am right now.

Ok, yes right now is not so bad with cytoxan behind me and a baclofen pump implanted inside me. But I couldn’t imagine being where I was six months ago, in the throes of chemo barely able to walk from my car to the infusion center and back again. Vomiting all the way home from the infusion center, and for days afterwards. It is the chance to be a better person, to help someone else out, to be. That’s the trick to learning to live with multiple sclerosis.