A long time diagnosing

As many of you know, it took about 18 months before I was diagnosed with multiple sclerosis. I and most of my family thought this was a long time. After living with this disease for the past three years I realized that initial 18 months is not really that long considering the type of ms, and most notably the fact that I am a woman. Whoa there, I am not being a militant feminist.

I have two other sisters with ms. For two of us it took about 18 months or so for a working diagnosis of atypical, chronic progressive ms. The other sister was diagnosed in about six months ( her MRI was lit up more than the Christmas tree at Rockefeller Center). I have spoken with many ms patients-both men and women-and by far I noticed that on the whole men were diagnosed quicker than most women.

Recently, I had a conversation with an ms specialist regarding the length of time it took for me to get a diagnoses.  The doc mentioned that more often it takes twice the time or longer for women to be diagnosed with ms (seems perhaps the dirty little ms secret). Yes, the doc had some ideas as to why this is the case.

First off, the symptoms of ms are usually vague. We all know them: fatigue, weakening of muscle strength, balance/coordination issues, cognitive, and memory issues (not feeling quite as sharp mentally and/or forgetting things more often). Because of the vagueness of the symptoms most docs don’t take women seriously or push the symptoms off as having to do with monthly cycles, hormonal stuff.  

Now I know there are a lot of women who have been diagnosed properly and in a reasonable amount of time. But the truth is there are a lot of women who are not. Yes, I and others have come across Dr. Headupmybutt, Dr. Moron, Dr. Iwanteasycases, and Dr. Itsallaboutmoney. Also the diagnosing criteria, McDonald Criteria, calls for very specific findings in order to put a typical ms diagnosis on a person. 

As far as I know, there is nothing typical about multiple sclerosis. All the literature I read states quite plainly that multiple sclerosis reacts differently with everyone. OK. So, we have a disease that broadly follows some norms, but even within that broad spectrum of norms nothing is typical or the same. For instance there are four types of ms (as we know it right now). These are broad categories in which docs try fit their patients. But even with in these categoreis (RRMS, SPMS, PRMS and PPMS) there are huge variations and differences. Not everyone with RRMS experiences the same symptoms, the same relapses, the same reactions to the disease modifying drugs (dmd). Not everyone with RRMS has the same amount of white spots, in the same pattern. I won’t go on, but you get the idea.

So we have a set of criteria to diagnose a widely varied disease of which there is no one definitive test and no cure. Even the effectiveness of the dmds are unknown. Let me clarify that: the dmds are known to be effective but how effective is uncertain.

I can understand why some patients who do not fit into the McDonald Criteria for diagnosing MS wait for a long time. I see the connection. What I don’t understand are medical professionals who know that there will be many people who fall outside the McDonald Criteria and yet they won’t help those people. These docs act like diagnosing MS is an exact science, with absolute tests and a certain pattern of symptoms that always develops.

I always had trouble with docs telling me they could absolutely guarantee I did not have ms. Really!??!! How can you guarantee an unknown? By the same token I am leery of any doc telling me they absolutely guarantee I HAVE ms. I mean if any test does emerge as being 100% positive for MS, then we’ll all know for sure.  Even RRMS patients need that test administered to them.  So, I guess it could be a long time before any of us are diagnosed with certainty that we have MS.

Cytoxan Effects

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.

Cytoxan prep

In June 2007 was my first chemo treatment. You can read about that experience in my Cytoxan post. I just wanted to note a few things about how I prepped for the idea of cytoxan and continued to prepare each month.

First, anytime you hear the word chemo, you know you are in for a bumpy ride. Nausea, weakness, hair loss, poison. Yep, thats right, poison. More times than I care to even remember, people in the past year have referred to cytoxan as poison. I know it is poison, but I didn’t really want to hear that word while have it was pouring into my body.  Its kinda like having the sad eyes of a cow looking through the restaurant window at you while you’re eating prime rib. You know what it is, but your mind rationalizes it, making it acceptable to eat cow.

That is what I needed to do. Understanding some of the possible side effects was pretty easy. I knew others who have gone through chemo, seen it before. I needed to wrap my mind around it. Also, and this is a biggie, I was not dying, I do not have a deadly disease. This works for and against chemo for ms.

Firstly, because I have ms I got a smaller dose than a cancer patient does. Great, hooray, less poison! Yet, when you are in the throes of being sick from cytoxan, your heart says, “hey is this worth it, I mean we’re not dying here.”  My brain responded with “oh yes, it is so worth it to feel better, and have a huge quality of life boost. Think of your son and hubby.”  If steroids made me feel better for a very short period of time, than why not try something that could make you feel better for a much longer period of time.

So, now it was a choice I was willing to make. Yes, I could be very sick for a few weeks every month for a year, but have a big payoff in the end. Isn’t that what we teach our kids. Work hard now and you’ll see a payoff in the end. Nothing just comes your way, you must work for it. And really isn’t that the joy of life-the journey. I mean we all, WE ALL, sacrifice and suffer in hopes of a payout.  You can insert anything in place of cytoxan and get the same result. Being a woman, I went through nine months of pregnancy then labor and delivery to have a child. Was the sacrifice worth it? ABSOLUTELY!

Keeping a positive outlook was also important for me. My hubby and I spoke those few days before my first dose. He told me not think of the cytoxan as poison, but as good medicine like it is. I did that. We also had a vision going in each treatment and throughout the year of us hiking a mountain. Actually, no, the mountain was not a metaphor of trying to get through the year, but I guess in retrospect that works too. It was what I loved to do. My son and I and sometimes hubby would hike up some of the local mountains. I love the outdoors, love hiking.

So this is what got me through the the year. Or rather a few months shy of a year as I also needed the baclofen pump. I learned to accept where I am. By that I mean I stopped thinking that I shouldn’t be doing this, I shouldn’t have ms, this wasn’t in my plans, etc. Instead, I thought okay, I’m here doing cytoxan right now, that is it. When I began thinking like that, I realized life is pretty good. Seems wierd, but it is the ‘thinking too much about it’ that creates problems. We ourselves put labels or beliefs or conditions on things that make us look at our situation as good or bad. Really it is just where we find ourselves at that moment, nothing more.

Filling in the blanks

Okay, so I thought I would go back to the last part 2006. Finally diagnosed in fall of 2006, and set for my first steroid (solu-medrol) in Ocotber 2006. That was a learning lesson. But how long would the effects of steroids last? I was hoping forever. 

Of course, we know that doesn’t happen. However, the docs, as usual, give you the pat answer, ‘Well everyone reacts differently’. Yes, but isn’t there some kind average, a typical time frame, something. No, not really or at least not that they were willing to utter. I guess that is for the best because sometimes if you give a person parameters (read boudaries) then that person conforms to that boundary. The proverbial self-fulfilling prophecy.

I really have learned to live each moment. In a part due to these wonderful docs of mine and in part due to slowing down in general. Learning to accept change (covered that yesterday, so I’ll stop there). Back to the story…

By the end of december of 2006 I began to slide downwards. Well, more like flying downhill on an icy slope with the new sled you just got on Christmas. So in Jan. 2007 (Hooray-its 2007) I saw docs who really pinned down exactly when I felt the slide. Which was about 8 weeks or so after the ‘roids. 

Another course of solu-medrol was ordered and administered in February 2007. Now by this time I had already seen a neuro-physiatrist to assess my walking and aid in whatever way possible. By Thanksgiving 2006 I had two AFOs (ankle-foot orthotics). Or as I lovingly refer to them as my legs. The physiatrist also gave me my beloved lofstrand crutches. Love really has nothing to do with it. I did notice a difference when using the braces and crutches. I certainly was not blazing any trails, but I was able to move around better, last a little longer. But, really it was the jolt of steroids that I had come to enjoy.

Solu-medrol (each time I had the steroids it was a five day course) really gave me a boost. I felt better, not great, but better. The only problem was that it didn’t last. Oh yeah, one other problem was that I took nose dives each time the stuff wore off. I mean it was like in a movie when the elevator is out of control and careening to the basement.

So by April 2007 with the steroids worn off, I was in pretty bad shape looking for another fix. Really, I felt like that. I wanted to feel good again; and couldn’t wait to see my docs so they would give me another course of Solu-medrol. 

My docs had a different idea, which they had alluded to the previous few visits. The idea was cytoxan-chemo. A year long treatment of monthly doses. As I previously shared, other family members have multiple sclerosis, have chronic or atypical progressive ms. So hearing ‘cytoxan’ was not completely new to me, to us (hubby with me every step of the way).

We sat and listened to their plan. Asked many questions. Finally, I asked “If this was your wife…”. Before I could finish the question, the doc said, “Yes, my wife, my mother, my sister, my daughter, my son, myself. This is the course of treatment I would insist they use.” WOW! He was straight forward and unwavering.

Now, I have to say that I have heard people with ms say before, “Seems the treatment is worse than the disease.”  I have never experienced that. I think that if this is your experience than perhaps you are not as bad off as you think. 

Even before we left the docs office that day we (hubby and I without even speaking) were eager to scream “YES! We’ll take the cytoxan”.  But being the docs they are, they did not want an answer then. They gave us info to take home and read over the weekend. I could not wait for monday to call them and get started.  

Why so excited about chemo?  Well because the treatment was not worse than the disease. Within two years of onset I was unabe to do much of anything besides sit on my couch. I have stairs to climb to get to my second floor bedroom. Without help from hubby and son I wouldn’t have made it at night. Hubby and I were getting ready to change our first floor living room into our bedroom. The only problem was my first floor didn’t have a full bathroom. I still needed to climb stairs to take a shower. 

We jumped at the chance to slow, halt, reverse some of this progression. I mean I should have been in a wheelchair, I was too stubborn. I’m too young for that, I thought. So we set out on a year long journey. This was a huge commitment by my whole family, but we stuck together.