On the Long Road

Hello Friends,

It has been way too long, but please believe that blogging has been on my mind. It feels like an entire life time has passed in the last few months. Life has really been kicking my ass recently, but I will do my best to bring you up to speed.

After 6 months without any non-medical time off from work, I was really looking forward to the New Year and a little time off. I scheduled the first few days of 2012 off just to relax and decompress from a hectic holiday season. It turns out once again somebody up there was looking out for me. I had been feeling a little off but decided to celebrate the New Year anyway, but by the first I was feeling many of the symptoms that brought me to the hospital when all of this began so many months ago. I was dizzy and uncoordinated. My vision was blurry and a new symptom had become unbearable. A sensation of 10 out of 10 burning searing electricity started to randomly shoot down my right arm. While it only lasted a few seconds, it really got my attention. Only occasionally at first, then almost every 5-10 minutes. By January 2^nd my symptoms had become so severe I found myself in the emergency room.

I probably should have gone sooner, but I can admit that I was afraid. Afraid that they would keep me. Afraid to hear that I was having a relapse and this was a sign of disease progression. Afraid that I might not recovery as much this time as I had before. If not for the pain I might not have gone at all, so as I talked about in a blog a long time ago, I often require a brick to get my attention and this pain was about a thousand bricks all at once. The doctor went through the usual lab work, but readily admitted that he was no expert on MS and any or all of my symptoms might be related to the disease. However, he was able to determine that I had a urinary tract infection (a possible side effect of my medication that I was aware of) and a course of antibiotics might help. He explained that he did know that a change in my body temperature, even that caused by a fever from infection could cause an exacerbation of my symptoms. He gave me some antibiotics and told me to follow up with my neurologist and my primary care doctor.

While I griped about it when it happened, I luckily already had an appointment scheduled for the next day with my PCP to complete a health assessment required by my new insurance company. Unfortunately she took the same position as the ER doctor and felt that this would be best addressed by my neurologist. So she gave me a referral to see the neurologist (though I had already been seeing him for months this referral was another new requirement under my new health plan) and an order for an MRI. Within a few days I had appointments scheduled for both. As I lay in the MRI machine I tried had to be as still as possible and prayed that the result would be positive. A few days after that, I sat nervously in the neurology waiting room trying to prepare myself for the news to come. This visit was truly a mixed bag. I receive the wonderful news that there were no new lesions, no progression of the existing lesions and one lesion appeared to be shrinking! I could not have been more relieved. The neurologist agreed with the ER doctor that the dizziness and balance issues were likely a response to inflammation and swelling cause by the increased body temperature brought on by the UTI. The new symptom, however, was not such a simple matter. My neurologist went on to spend a great deal of time explaining to me why he did not believe that MS caused pain, but that he would give me something anyway. Maybe in response to the expression on my face, the doctor then said that the pain is likely very real, but he believes that it is caused by something other than the MS. I was a little shocked. I didn’t know what to think or say. I knew that what I was feeling was more real than I would have ever wanted and I had never experienced anything like this before. I took the prescription, but left with the horrible feeling that the doctor thought this was all in my mind or worse yet that I was making it up. When I took the pills with little relief in my pain, I didn’t know what to do. I worried that I would be categorized as a “drug seeking” patient if I complained again. It came to the point where the pain was interfering with my ability to concentrate or do my job. If I was in pain I was worrying about when the next wave of pain would come. One night when it was so bad that I couldn’t sleep I started to think about just cutting the arm off to escape this torture. At this point I realized that I need to figure this thing out, because it had gone too far.  So I did what I do best, I began to do some research.

I found out that 55% of MS patients deal with pain at some point and 48% have chronic pain. The type of pain I was having was known as a dysesthesia or neuropathy and is actually fairly common. I also spoke with a couple of friends at work that specialize in pain management. They encouraged me to call my doctor right away because I was on a very low does of medication and the neuropathic pain that I was experiencing could be treated effectively. So I called and the doctor increased my dose and the pain went away, for a little while at least, but I will get back to that later. The only lingering issue how can I work with a doctor who does not believe my symptoms? On many of the internet forums I had previously avoided because of my initial impression that there was a lot of whining, proved to be a major source of personal solace and validation of my experience. There were many others there who have gone through the same experience. I was glad to know that my doctor was not the only one out there with this theory, nor was I the only patient to feel uneasy about it. Many of the post that I read encouraged people to seek out new doctors who are more open to the pain issues often seen with this disease. This leaves me to wonder about my priorities in a doctor. In my early adult life, my major concerns where location and late hours. After that it was having a doctor that didn’t make me feel rushed and developing a consistent relationship with one practice. Now I am realizing that I need to feel that there is a cooperative relationship based on a mutual understanding of goals and priorities. While the balance and ambulation issues have been difficult I have found ways to adapt. While inconvenient at times, with some creative solutions the impact on my life has been minimal. On the other hand this pain was an insurmountable obstacle that impacted my life significantly. It seemed that there was nothing I could do to conquer it on my own.

With my pain under control and the comfort of knowing that my MRI results were so positive I thought that I might be over the peak and could settle into some normality. This is when the other shoe dropped (right on my head). A while back I told about the struggles I had with the injection form disease modifying drug (DMD). The FDA had recently approved an oral DMD. It had only been on the market for about a year after a relatively small clinical trial. Even this small trial had identified some cardiac risk but it appeared that with careful monitoring of the first dose outcomes were positive. The experience with the injections was so horrible I felt that I might be driven to quit DMD treatment altogether, so I decided it was worth the risk.

On October 31^st I started the new medication. I made it through the first dose without dying so I thought I was in the clear. Well, it turns out not so much. I received a call at work from my neurologists’ nurse who apologized for contacting me at work, but explained that several recent deaths are possibly linked to the medication that I was taking and that my doctor is advising all of his patients to stop taking it immediately. The doctor would want to see me as soon as possible. I was completely taken aback by the news and was having trouble processing the information. I went to my fall back position and started researching. While the company website failed to mention this issue at all, several medical journals did. The European version of the FDA had even started a formal investigation. As it turned out at least 11 people had died and the likely cause appeared to be this new medication. I talk to some professionals at work who explained that typically 1 death in 40,000 patients would be considered significant enough to warrant some concern. With my medication it appeared to be 11 deaths in just under 30,000. Also, these were not people just starting on the drug which based on the drug company literature was the “danger zone”. These were people who had been on the drug for months, just like me. I was nearly frozen with panic. As if I wasn’t freaked out enough already, about 2 hours later I received another call at work. This time from the specialty pharmacy that provides my medication, also advising me to stop this medication at once. Novartis Drug Investigated In 11 Deaths

The next week waiting to see the neurologist was filled with fear. Most of you already know that I am a worrier by nature, but I have been working to change that. In this situation there was no way. Several of the patients had just dropped dead with sudden cardiac arrests. Others had changes in their cardiac rhythms that eventually lead to their demise. I couldn’t help but wonder if I would just drop where I stood or fall asleep and never wake up. I worried that I had turned myself into a walking time bomb with the timer running. I did my best to occupy myself with other things and console myself with the serenity prayer. It helped a little because if there was a problem the damage was already done and there was nothing I could do to change it. I did avoid being in my office for fear that something would happen and no one would know. I mean I would have felt pretty stupid if I managed to die in the hospital, maybe the one place that I would have a chance of surviving any complications. My office is on a cardiac unit for crying out loud!

My visit went well and I found out that within a few days the drug (and accompanying risk) would have cleared my system. I was out of the woods on this one. As happy as I was to hear this the bad news was not far behind. Unfortunately, this all meant that I would need to go back on the Rebif injections that hated so much I risked slightly less deadly cardiac complications in the first place.

TO BE CONTINUED…