MS Strength

The relapse I had in the spring of 2006 was my second debilitating experience. The double vision episode the year before was my first journey into the belly of the beast that is MS. In June of 2006, after changing medical treatment and finding a caring, aggressive neurologist, I had my first steroid therapy. During this time I was experiencing bad vertigo, “buzzing” that made my whole head feel like it was vibrating, swallowing difficulties, the MS “hug” or severe tightening around my upper torso, exhaustion, and left leg weakness that made me walk like a duck. I had a bladder infection— common for MSers with bladder problems— and towards the end of the attack, facial numbness. I was a wreck.

The first steroid experience was a bit unsettling. I didn’t know what to expect. My nerves were shot to begin with, since I didn’t know how long the attack would last. The steroids made me so sleepless and miserable. I would lie awake and hope for sleep. I tried Ambien CR and Lunesta, but they lost their effectiveness after a night or two. Finally, my neurologist prescribed Klonopin, a multi-use medication. This was fantastic. It knocked me out and kept me asleep. I wish I had known about it when I first started the steroids.

I finally emerged from the 2006 attack in July. I started talking to a social worker who helped me sort out all of my emotions. This helped (and still helps) me tremendously. Many of my symptoms went into remission and I was able to cut my medication list down to two things. I took Betaseron injections for the multiple sclerosis and I believe they really helped me. From that 2006 attack until my recent 2008 attack, I had been in pretty good shape physically. I was careful not to overdo it, until the spring of 2008.

I began to work outside of the home, again at a local library. I was so happy to be out, but I did work that was way too physically demanding, and the temperature of the library was usually quite warm. This job lasted for about 4 months, until I couldn’t deny that I was having another relapse. Again I was forced to stop working. I have to say that this relapse was a little less frightening than the last time, probably because the Betaseron had “watered down” the attack. Most of my previous symptoms came back, especially the weak limbs and the exhaustion. But they were less intense. I also was armed with coping techniques that I didn’t have in 2006. All in all, the MS attack of 2008 was a little less disturbing.

I am now, again, emerging from the attack, and this time some of my symptoms have not gone away. I believe I am more tired and tingly than before, and my left leg still feels, at times, like a lead pipe. I suppose I have to renegotiate my path and tread forward, but I am better equipped today than I was 2 years ago.

In the spring of 2006, I was having trouble with my old MS symptoms, and new, scary ones were evolving. I was participating in a clinical trial, but I felt that the doctors were just monitoring me and not treating my multiple sclerosis. I was recently out of work, due to sickness, and very stressed as well as depressed about my future. I had filed for disability in February of 2006, since I was having trouble maintaining even part-time work. Bill was teaching at the time (his third year as an alternate route candidate.) He didn’t receive tenure, which meant he would have to start again at a new school system or change careers. Since he didn’t go the traditional teaching route and had merely “tried on” teaching for fit and compatability, he decided that he would try something else, since he didn’t love it. More stress as we were (briefly) both unemployed.

When I started to experience a weird tingling sensation when swallowing, I began to really panic. I went to visit the doctors in the clinical trial, and the director informed me that I wasn’t having swallowing issues, because that is a symptom of a more advanced case of MS. He told me to take Neurontin, a neuropathy medication, and it would stop any tingling sensations I was experiencing. I replied that I know what strange swallowing feels like and isn’t such a new symptom evidence of an acute attack? I also stated that although I was only diagnosed in 2005, I’d had symptoms of attacks since 1998.

I was disregarded by the doctors and told to just continue taking the Betaseron, after having also been disregarded about the new vertigo symptom that started in the winter of 2005 – 2006. I was at my wit’s end with getting no answers, and decided to change my plan of attack: I sought the help of a recommended MS specialist in my area.

When I visited this doctor, he finally answered my questions. Yes, the vertigo and swallowing problems were probably signs of a new attack, and yes, someone as young as myself could experience swallowing issues (depending on the areas of my MS lesions, not on how long I’d had MS.) He sent me for MRIs and started me on my first course of IV and oral steroids. An interesting experience.

I think the spring of 2005 through the summer of 2006 was the worst year for me (and my husband) physically, emotionally, and financially. It was the first time that my MS was, for the most part, out of control. The year felt like one long, continuous relapse.

Before this time I had suffered yearly relapses (between April and July) that were annoying but not severely debilitating. I was able to work part-time and we figured this would be the plan of action, since we knew I probably had MS, and part-time employment I could handle. Ultrasound, which I was trained in and with which I made the best income, seemed more and more like an inappropriate career choice, even part-time, because it involved little sitting or possible breaks in the schedule (contrary to movies and TV, ultrasound techs often scan on their feet to get the exams moving along and keep the pace. Pregnancies aren’t even leisurely exams.)

I began volunteering the year before at a local library, helping to reshelve the books. I did this for about 2 hours a day, 2 days a week. I was a paid shelver for about a month, then hired as a part-time library assistant with some evening and Saturday hours. The schedule was good for me at the time, and I really found an environment that worked for me. So when April of 2005 came around, almost a year after starting there, I was floored when I developed double vision. This clinched my MS diagnosis, and it started my involvement in a medication clinical study. It also began my struggles with working outside of the home.

In May of 2005 I started the study, and was given Betaseron, an MS disease-modifying drug. The study was basically comparing Copaxone, another medication, to Betaseron (regular dose), and Betaseron (double dose.) The theory was that, if tolerable, a double dose of Betaseron would be twice as effective as a regular dose of Betaseron or Copaxone. I knew I was on Betaseron, but I didn’t know which dose I was taking. Side effects for Betaseron include flu-like symptoms such as fever, chills, headaches, nausea, and body aches. I had all of these symptoms as I began taking the drug. Taking Tylenol or Motrin really didn’t help, and I was doing the injections every other day. Somehow, during all of this transition and while suffering from left-sided double vision, I was able to have my family cart me to work and back. Surprisingly this first month was not when I missed the most work.

The summer came and the double vision very slowly resolved itself. I found a way to turn to my left and not glance out of the corner of my left eye. This relapse did not fatigue me, so I went to work and did the best I could, and disclosed my diagnosis. Everyone was very supportive, and I learned that one of my immediate coworkers also had MS, although a milder version.

The clinical trial involved lots of blood work and constant evaluations. My balance and walking were always checked. Meanwhile, over the summer, I started to really feel lousy from the side-effects of the Betaseron and new emerging symptoms. I was developing a tightening around my torso that felt like a really strict corset. Sometimes it took my breath away. The doctors just recorded the information. Towards the end of the summer, the library director, one of the best supervisors I’ve ever had, gave me unpaid leave to try to rest up and feel better. I took about a month off, but I was still having problems with pain/burning/tightening in my ribcage area. Even sitting down would trigger pains. I was running to the bathroom a lot, because food was going right through me. My old symptoms were starting to rage as well. The doctors at the clinical trial just kept recording everything.

In the winter of 2005 – 2006, I was back at the library, with a slightly reduced schedule. One day I felt quite dizzy. This was new. I had never experienced vertigo before. It was horrible. When I went back to my doctors and told them this, they said it couldn’t be a new relapse. Maybe it had to do with migraine auras (from which I didn’t suffer.) All this was recorded by the doctors, but they didn’t treat the vertigo or do MRIs to see if I was having a new attack. Meanwhile, I was so sick from the dizziness and a new fatigue, I again missed a lot of work. In February, my boss had to let me go due to excessive absences due to MS. She wrote me a letter of explanation for the future, citing my inability to work my scheduled hours and not my performance (which was “excellent”) as reasons for termination. This would become evidence for my future disability case.

I became depressed that I couldn’t work. It was the first time the MS had really stopped me from keeping even a part-time work schedule. It is the worst feeling to want to do something, but having your health prevent it. I was also missing a lot of family functions and outings with friends. I was getting frustrated with the clinical trial too, because I felt that the doctors were minimizing my problems. It was as though they didn’t want to admit I was having a new relapse because it would mess up what they were trying to prove in their study.

Things were about to become worse before they got better. As spring 2006 arrived, my old symptoms raged, the dizziness lingered, and a couple of new symptoms evolved. Time for a change as I found my current, awesome neurologist (through word-of-mouth) and learned that indeed, I was experiencing a full-blown relapse. Proper treatment with steroids would follow. At the same time, my husband was undergoing a major career change, which threw us into even more financial instability. Another new, uncertain frontier.