Filling in the blanks
September 25, 2008
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.
Learning to Live with MS
August 25, 2008
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.
Real Diagnosis
July 21, 2008
In June 2006 after an unsuccessful year of pursuing some treatment with three different neurologists, I hit the jackpot with Sis’s neurologists (one fellow and one Multiple Sclerosis specialist). From June until early August I went through MRIs, blood tests for a whole lot of different diseases, and lumbar puncture.
When these test results came back to Dr. Kindhearted (my primary neurologist) and Dr. Caring (the MS specialist), Dr. Kindhearted called informing of these results. Unfortunately, they all came back normal. Now I say unfortunately only because this delayed diagnosis; and I thought they would stop treating me. I had only just begun the baclofen but I felt some improvement in my legs.
I followed up in August 2006 and was sure Dr. Kindhearted and Dr. Caring were going to say, “Well since all the tests are normal except for that small white spot on your MRI which we are pretty sure isn’t causing all your symptoms there is nothing more we can do.” But they didn’t. In fact, Dr. Caring said the normal test results just makes their job harder, but that is ok because they like a challenge. He also said that even normal test results are helpful to them because it points them in different directions or helps eliminate other diseases. Multiple Sclerosis is really a disease of elimination: other diseases must be ruled out to rule in MS. We were still on track, they were still digging.
They increased my baclofen again at this visit in the beginning of August. They put me through the litany of neurological tests in the office. They then conferred and returned to the exam room. Apparently, my eyes were getting worse. The abnormal eye movements were more pronounced, incoordination worsened in both hands and legs. The spasticity worsened, worsened from mid-June to early August. That was disheartening to hear. Although I knew my eyes were not right. It felt as if I was losing coordination of my eyes, like my eye muscles were weak and didn’t seem to do what I wanted them to do.
In addition to increasing the baclofen, they did genetic testing for CADASIL. As you may know my two sisters were already diagnosed with RRMS. MS is one of the differential diseases when diagnosing CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). WOW, what is that?
Well according to the Genetics Home Reference (Click for the long story) website it is an inherited condition that causes strokes and other impairments. That’s they short story.
I was sent home with the appointment for the end of September still in tact. It was then that I would get the results from the genetic testing. Yikes! Although the docs didn’t seem to think that it was CADASIL, but due diligence must be followed. Ok, I guess I can deal with that, I mean after all these docs were traveling down roads of which I am sure the buffoons I had previously seen never even heard about.
Hubby and I went home relieved. We survived a second appointment and these docs and Dr. Kindhearted and Dr. Caring were still busy searching for answers.
Atypical Multiple Sclerosis 