Atypical Multiple Sclerosis

A recent commenter asked about the effective of cytoxan for myself because of his impending dance with the drug (poison).  I say poison because that is what my docs, and chemo nurses called it. Cytoxan worked for me. They could call it whatever they wanted I am grateful to have the option and to have completed my course of cytoxan.

When my docs presented me with the option of cytoxan-a year long course followed up by Cellcept also an immunosuppressant that works on the T cells-I was ready to jump at the chance. Having twenty-five years of experience they told me to take a few days and really weigh my options. In my head and really to the docs as well there were no options. I could take the chemo or I could be fully disabled. By fully disabled I mean in a wheelchair unable to complete daily living tasks (nice term for dressing, washing, feeding myself), unable to participate in my teenage son’s life. Doing nothing was no option, it was more of a life sentence. 

See, that is how bad my atypical ppms became. It made poison, cytoxan, attractive. Sometimes I hear or read about patients (ms patients) who complain about how a med makes them feel. That they want to stop it, take a break from it. My theory is that if you are able to complain about a med, then you aren’t at a point in the disease to warrant that med.

Don’t get me wrong, I didn’t eagerly awake on those infusion mornings excited to go and fill my body with cytoxan. But I was grateful to have a medicine that worked. Yes, it is the toughest treatment course I have ever been through. After each infusion I spent five days or so feeling terrible. Worse than any sickness I’ve ever felt. Then slowly I began to recover from the cytoxan. Sometimes I would lose five or six pounds in those five days because I was so sick. But it didn’t last. I would begin to feel better, get my strength back, get my stomach back- about two weeks later. Then feel the improvement that cytoxan brought about for another two weeks before the next infusion.  This roller coaster ride lasted ten months. 

The first month I notice a big improvement. I had a bounce to my step. The next two months I didn’t notice any big improvement except a plateau. For two years prior I continually slipped downward so a plateau WAS an improvement.  That is how my experience went. A big improvement followed by a few months plateau followed by an improvement and plateau. 

My course of treatment was originally for a year, but at about nine months it was evident that the spasticity my trunk and legs experienced needed more than cytoxan. So I was scheduled for implantation of a baclofen pump. And I went through one more, my tenth, treatment.

Ok you say, if cytoxan helped why did you need the baclofen pump.  Well, initially I was on 110mg of oral baclofen for spasticity, using two forearm crutches, and two AFOs with minimal success. The cytoxan gave me the strength I needed to go through the surgery and then to enjoy the pump afterwards.

What did improve with the cytoxan? My strength, endurance, coordination, fatigue, balance and most importantly I have sustained these improvements. It has given me my quality of life back. Well, cytoxan has given my family their wife, their mom, their quality of life back.  

By the end of the treatment, just driving into the parking garage made me feel sick. Before I began the treatments I ha a vision of what I wanted to happen. I wanted to be able to keep up with my family, go places, do things. I love the outdoors. We would hike before ms struck. So I kept the vision of me and my family hiking together while I was in the infusion center, while I was getting sick after the treatment,during the two good weeks a month. I kept that vision until after the baclofen pump was implanted. I kept that vision until we did hike. 

I was able to stay focused, tolerate the treatments, and have a positive attitude because of my family. Hubby stayed by my side during those treatments. Hubby and son took care of me during the recovery. Family and friends called and visited often. I have said it before, they carried me on their backs when I was unable to move on my own. WIthout that vision, without hubby and son, without family and friends I would not be where I am today. Also of course, kudos goes to my docs.

During a recent checkup, one doc mentioned that I should have been in a wheelchair, but I was too stubborn to ask for one. That maybe true, but it is that stubbornness which helps me fight this disease. 

How am I doing now? I have written about this in recent posts, but I’ll go a bit further now. Since the cytoxan and pump we (my family and I) have go away several different weekends this fall. One was a relaxing weekend at an all inclusive resort. Not taxing at all on any of us and yet before the cytoxan and pump I would not have been able to even go there. The other weekend was full of sight-seeing. A whirlwind of sorts. I was able to keep up with my family and we all enjoyed ourselves.

I am sure there are people who have had terrible responses to cytoxan, but I didn’t. I jumped at a chance to slow down this disease, to gain improvement. With atypical ms, you don’t have a lot of options, aspirins aren’t a choice.