Atypical Multiple Sclerosis

Well, I’ve taken a bit of a hiatus for personal reasons.  I’m back though and would like to thank everyone who visited this blog while I was away.  And a special shout out to everyone who has commented during this time as well.

I am glad to report that I am still feeling very healthy.  The cytoxan and subsequent follow-up on cellcept has been successful, as has been the Baclofen Pump.  I am more mobile than I have been in years.  It feels good.  There were some minor bumps along the way though, just like real life.

I have switched from cellcept to myfortic.  I had some stomach issues with cellcept which I guess can happen.  I am told by docs that most people tolerate the med okay. I didn’t.  No big problems.  While on cellcept I had a constant feeling of nausea and then some suspected bleeding.  A quick endoscope and a change to myfortic fixed that minor issue.

Myfortic is the same med as cellcept only with a time release coating that prevents stomach problems.  That is the best way to describe it, I think.  Also the dosage is a bit different.  You need less to obtain the same effect.  So why would docs prescribe cellcept instead of myfortic?  Good question.  I had the same one myself.  I bet you can guess the answer.  Go ahead, guess.     The answer is insurance.  Myfortic is more expensive than cellcept and considering that “most people tolerate” cellcept well there is no point to cover myfortic before trying cellcept.  Or so goes the politically correct response from most prescription coverage plans.

Oh, don’t get me wrong, I am not bashing the insurance companies.  I am hoping they are my friends in light of the new healthcare initiative pushed my the present governmental regime.  That is all I am going to say regarding politics. We all have our own thoughts and ideas and feelings in the matter.

The other issue for me, I guess it is an issue.  I haven’t really made up my mind yet.  But since I got the baclofen pump, I haven’t had a refill appointment in which the pump wasn’t increased.  Everytime  I go for a refill I need to increase the dose. I am stiffening and sore.  So what’s the problem with that? I’m mobile, I’m not in severe pain, I’ve been able to keep active.  Sounds like a dream come true.  And it IS a DREAM COME TRUE!

I just have this nagging feeling that as good as I am right now, some symptoms are never going to go away, even for a moment.  Spasticity is apparently here to stay. I’ve made friends with it and am so thankful for the baclofen pump and the docs who knew when to offer it to me.

Since the implantation of the pump I have learned that some MS patients are found in nursing homes wrapped like pretzels from the effects of spasticity.  These patients didn’t have docs that knew about the pump or cared enough to find out.  I heard about one woman, in her late thirties with children, who was left in a nursing home to curl up.  After the pump implantation she was able to go home, in a wheelchair (at least she was sitting up and uncurled), feed herself and be a part of her family.  WOW! That is a success story!

When I hear stories like that, it puts my life in perspective.  I am thankful for the technology available today, thankful for my doctors, thankful for my family’s support and happy to only have my current issues.  Sometimes the devil you do know is better than the devil you don’t. AND it is always important to research, reach out and empower yourself with knowledge.

So there I was angrier than I had ever been.  Anger ran deep inside me, to the very center of my bones, washing over me like baptismal waters. Once my anger publicly surfaced, I had to do something about it. Funny thing is I know, have known for a very long time that the only way to effectively deal with something is first to admit it.  Can’t fix a problem that doesn’t exist. 

I am not sure why anger is not on the list of symptoms of multiple sclerosis, or really any chronic disease because it is always there.  Anger accompanies diseases.  They walk hand in hand down the aisle. But that is one marriage I wanted no part of, didn’t even want to attend the wedding.  

I had to admit that I wasn’t in control. No one was in control. Life happens.  I rather despise that cliche. But it is true. Stop and look backwards.  My guess is no one’s life really turns out exactly like they expected. Again, it is the expectations that make us suffer. I mean you don’t have to a disease to feel anger, we all feel it, we all suffer from it.

How do you relieve the anger?  That is the question. How do you relieve the constant battle in your mind that says, “Hey, it’s not supposed to be this way?”  For me, I had to accept that this is the way it is; I have atypical multiple sclerosis. Ok, so what?!?Does that mean I can’t live anymore? NO! Does that mean my life is not worth living? NO! 

Simply put it means I have atypical multiple sclerosis.  I am still a mother, wife, woman, sister, daughter, friend. So I have vertigo, fatigue, spasticity, etc. You know the drill. I am still myself. I can still enjoy my life, find happiness, experience all that life has to offer. Yeah, perhaps I experience some rather unpleasant symptoms, but that is not my whole being for my whole life. 

I found that when I accepted that these symptoms were now a part of my life, I wasn’t so busy thinking this or that shouldn’t happen.  For example, spasticity.  My legs felt (before the baclofen pump) like two cement pillars. When I tried to walk I felt like I was trying to drag these cement pillars through a muddy bottomed lake.  I would think, this is not supposed to happen. So not only would it be difficult to walk, but I would be internally struggling trying to get back to some imaginary idea of proper walking.  When I said, “Hey this is the way I walk now. It just is my way of walking.  I won’t walk like this forever, it will change,” I no longer struggled internally.  That was a big relief.  Did I walk any better? NO!  Was it easier to walk? Not physically, but mentally it was much easier.  I no longer carried the burden of trying to fit my square situation into the round hole of life. 

With that burden lifted, I began to see, experience, feel the wonder of life again. So, we talk all about the difference of relapsing remitting versus chronic progressive multiple sclerosis, or cytoxan, or having a baclofen  pump implanted, but the real key to dealing with chronic disease is to realize life happens.  It is only when we stop imposing our ideas of what should be that we find happiness.

Anger seems to be a byproduct of chronic diseases. I haven’t met one person yet who has never felt or shown anger. Now add the stress of a life changing chronic disease and anger sprouts; grows better than flowers surrounded by manure.  Sometimes that, flower surrounded by manure, is exactly how I feel – not in a good way. 

It is this anger that really surprised me. As you know, I spent a while and several docs trying to get diagnosed, trying to get help.  So when for various reasons these docs would not help me, I felt anger. Angry that these learned people refused to help me; I know if they refused me then they also refused to help other people. That made me angry. After I didn’t got to medical school, take the Hippocratic oath: which basically says if you can’t help then don’t hurt. 

So when you need help, you reach out to someone who can help you and they refuse, you normally feel anger. That anger I knew. We are always getting mad at someone. There is a perceived valid target for the anger. Logically, we know that anger makes no sense, isn’t helpful, and isn’t productive. But anger is a response we are taught and feel righteous expressing at someone or some situation.

But that isn’t the anger that surprised me. That isn’t the anger of chronic disease as I know it. Within six months I went from a snowboarding, mountain climbing mother to a couch potato unable to move due to weakness, fatigue and spasticity. So you say, well thats a situation worthy of anger.

Yes, maybe, but I was angry at other people and it surprised me. The first time I exhibited this anger and surprised myself, I was a passenger in a car driven by my mother.  And true to statistics-most accidents happen within a mile of home-my mom was driving me home and we were about three quarters of mile away when I witnessed it.

It was a woman jogging. A woman jogging and listening to music while pushing her baby in a stroller. A sight seen on most streets everyday-typical. Only I was dealing with atypical multiple sclerosis.  Watching that woman jog toward our car, or our car careening toward that woman, all I could think about was how much I hated her. How much I hated her because she do something I could no longer do. How much I hated her because she will get to run around with her child AND I couldn’t anymore.  I blurted some expletives that catching my mother by surprise, catching me by surprise. The depth of that anger embarrassed me, caught me off guard.  I guess I must have been feeling it but didn’t want to admit it.

It was that anger, that much anger at someone I didn’t know, doing something they thoroughly enjoyed that didn’t hurt anyone, that changed my life. Changed my life almost as much as MS.

I reflected on that anger for awhile, wondering where it came from, why did it come out at that moment, how to rid myself of that anger. In order to rid myself of that anger I really needed to understand it. Before MS I would roll with punches. Don’t get me wrong, it wasn’t like I didn’t get angry. I did. But I would adapt and move on. This time the anger scared me, it was unprovoked, aimed at an innocent person, and I had trouble controlling it.

That one moment in my life changed me. I felt like atypical chronic progressive multiple sclerosis had robbed me of the rest of my life. I had to admit that and it’s tough trying to be mad at a disease, I mean the disease is in your body, it is a part of you. What are you going to do-be mad at yourself for getting a disease you had no control over.

See that’s the rub-expectations. Seems when I don’t have control and things spin in a direction that is unexpected anger happens. So, that one moment of complete hatred and anger at that woman innocently jogging with her baby changed my life. I still have ms, I still have a chronic disease, but it put me on a path, a journey of understanding.

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.