Twelve years ago I was a relatively healthy 35 year old woman. It started out innocently enough. I felt like I was listing to the left when I walked but I couldn’t correct my course, like a ship fighting a cross-current. I told my brain to tell my legs to move back to the right but either my legs weren’t getting the message or they weren’t listening.
My depth perception was off and the world didn’t look the same as I remembered. Stop signs came up suddenly and reading became a little more challenging with strange white spots in my field of vision. I was taking afternoon naps every day while my 18 month old son did because I physically could not stay awake. The daily fatigue was intense. I could fall asleep folding laundry or feeding my son. I felt like I was developing narcolepsy. I was bumping into things and getting a little concerned about it. When I actually fell working out I made a doctor’s appointment.
The doctor that I saw told me it was likely vertigo or something similar, which I readily believed. I went home and decided not to worry about it, probably just a passing issue. Then my left leg started not to be able to keep up with my right. It was dragging behind like a stubborn child who didn’t want to come with. That new symptom sent me back to the doctor. They told me that whatever was wrong was likely caused by some type of inflammation and if they gave me intravenous steroids it may help. I had an 18 month old son at home and spending five days in a hospital getting i.v. steroids did not seem like a viable plan. I was told that other than that they had no idea of what to do and so I returned home again, no closer to knowing what, if anything, was actually wrong with me.
There were funny moments during this time. I’d be walking down the hall dragging my leg behind me and I’d fall down. My older son, who was 9 at this time, would yell to his dad that mom was down again. They made a game of helping me back up. My 18-month-old thought it was great that mommy spent so much time on the floor.
Then I went to visit my grandfather in the nursing home where he was recovering after surgery. They were having a flu outbreak and I brought it home with me. It was just a typical flu-like illness with fever and vomiting, but it changed everything. My entire left side from the neck down just stopped working. That created a situation we couldn’t ignore or laugh off. I was back to the doctor, this time they did blood work, MRI’s and a lumbar puncture. I saw a doctor I had never seen before but I can still hear her voice on the phone when she called to give me the test results. This doctor who I had only seen this one time told me that she was sorry, but it looked like Multiple Sclerosis, MS, and I should check into the hospital for treatment. That was it, just that.
When my husband and I were first together we’d done the MS Challenge fifteen mile walk several times, raising money for the MS Society. We didn’t know anyone with MS, nor did anyone in our families have MS or any related illness that we knew of. I wondered if I’d jinxed myself by doing the MS walk all those years, ridiculous, but your thoughts get ridiculous when confronted with something you can’t possibly digest at that moment.
I checked into a local hospital, a fine trauma hospital, but this wasn’t trauma. It was neurological, which as it turns out is a total crap shoot. The nurses started my intravenous steroids, a trick in itself as a hereditary condition dictates that I have abnormally small veins and vessels. I sent my husband and kids home, having no idea that this was just the first night of what would be a month of hospitalization away from my family, away from my 18 month and 9 year old sons, away from my beloved dog who would celebrate her last birthday without me.
The intravenous steroids corrected the vision issues I was having almost immediately, which is often the case. Inflammation of the optic nerve often causes the vision disturbances in MS and similar conditions. Steroids reduce that inflammation and your vision clears up like magic. That was good, but my left side paralysis was not responding at all to the steroids. The doctors were having me do physical therapy, which I thought rather stupid at the time since I couldn’t move one side of my body. I remember the therapy exercises made me feel even more clumsy and awful than I already did.
We decided to seek a second opinion and go to the Mayo Clinic, about fifty miles from my home. I was initially seen by a Mayo Fellow, a doctor who took a look at me and made it his mission to get me back home to my family. We were proceeding on the theory that what I had was MS. In order to diagnose MS, they can really only rule other things out. They rule out Lyme’s Disease, Lupus, and Guillain-Barre Syndrome among others. They’d ruled the normal suspects out, so we were left with MS. The severity of my first episode was not the norm, given that I had no history of anything similar.
I was told about a treatment being used with good results, apheresis. They would hook me up to a machine that would take all of my blood, cycle it through a machine that removed my faulty plasma that was attacking my own nervous system and replace it with synthetic plasma that would not attack my nervous system. There would be seven treatments involved. I was given a 50% chance I would respond to the treatment and get some movement back on my left side. The biggest worry for me, because of my small veins and arteries, was the large catheter they needed to hook into the big artery in my neck. I was assured that it would be a fifteen minute procedure, they even used ultrasound to assist in finding the neck artery. Sadly, my fears were well grounded. Even with ultrasound, the 15 minute procedure took three and ½ hours. I happen to be a redhead so there were additional issues with anesthesia, which just didn’t work. I hope the poor surgical resident that went through this harrowing experience with me didn’t walk away from medicine. I may have.
Three resident doctors attended me at Mayo Clinic. Two of them were absolutely wonderful doctors that assured me everything was going to be fine and I would get back to my life. They seemed to be doing their best to make that happen. The third resident was a different story. I called him Dr. Doom and Gloom, to his face. After his visits I was pretty sure my condition was permanent and that I would never see my family again.
They started my apheresis treatments. The night after the first treatment I was lying in my bed thinking and was playing the piano in my head, which I do often to occupy my mind. I realized that I was moving the little finger of my left hand. My doctors were thrilled that I was responding so quickly, except Dr. Doom and Gloom, he hovered, waiting for a setback. The apheresis treatment was very successful and my left side essentially recovered after my fifth treatment so the remaining two treatments were canceled. I did quite a bit of physical therapy while I was still at Mayo before they sent me home. A reasonable goal was to be able to walk again before I returned to my regular life.
When they sent me home, after 30 days spent in various hospitals, I had a certain understanding of what had gone on in my brain. There were two very large lesions similar to those found in people with MS, however; they looked quite old which could not be explained. They are large enough that my doctors were surprised I had no disability evidenced. There are also chemical markers for MS normally found in the cerebrospinal fluid. Some were found, but not in the amounts they are normally seen. I was told that a diagnosis of MS could not be made with certainty until I had a second episode. All in all I had a very strong maybe. My Mayo doctors recommended a local neurologist and I went to see him once I’d settled in after being home from the hospital. We reviewed all of my information and proceeded on the theory that it was most likely I had MS. After the severity of my first episode you can imagine I was in no hurry to have a second. I went on medication, an injectable interferon, designed to prevent further damage to my brain and hopefully lessen the severity of any future episodes.
During the past twelve years I have had regular MRI’s and have taken thousands of dollars in medication. I’ve had no issues that could be classified as a second episode. I’ve had minor flare-ups of old symptoms, but no new symptoms. I had to stop taking the first medication because it caused me to become severely depressed, which is a possibility warned about when starting the medication. The second medication I was on I had an allergic reaction to while I was on vacation and had to discontinue.
My MRI’s show no significant change in my brain at all, no noticeable disease progression. What I do have is the constant uncertainty of knowing that something bad happened in my brain and could maybe happen again. I have been off of medication for about six years now and there have been no worrisome changes. My neurologist is not pressuring me but does suggest that I should be back on medication, just in case.
I have to be honest, I don’t want to be on medication, especially not medication that we’re not sure I actually need. It’s extremely expensive even with insurance. I can’t even imagine what people do who are not insured. There are medications now that aren’t injectable, so that’s better, but all these medication have potentially serious side effects that could make my life significantly more difficult than it currently is. Who wants to do that when they don’t know if they need to? I have to weigh the potential of serious disease progression against the past twelve years of no change. It seems the odds are with me, but betting on your future health, especially when it comes to a disease as potentially debilitating as MS, is not an easy choice. Not only do I have to consider the potential consequences of my actions for my future physical health, but I wonder if down the road, if things go badly, how I’ll feel knowing I made the wrong choice.
Will my choices now cause permanent disability for me in the future? I’ve made about a 95% recovery after my neurological episode. I have some lasting issues. I can no longer ice skate or rollerblade, or run down the stairs, and I’m clumsier than I used to be. Otherwise my physical life is relatively unaffected.
People tell me that I handle living with the possibility of MS gracefully. I’m grateful that they think so and glad that I give that impression, but living under a constant cloud of uncertainty has taken a toll on me and on the people that care about me. It’s been so long that I don’t think about it much now, but when you live under this cloud you’re apt to take every stumble, every misstep as a warning. Is this going to be the day, is this my second episode?
I don’t dwell on my uncertainty anymore, but it can be difficult to live with. When you have an answer you can take definitive action, but what about when you never actually have an answer? My medical diagnosis is currently Clinically Isolated Syndrome, CIS, as official as it can be given my unique situation.
Obviously, I am in a much better situation living under my cloud of uncertainty than are people who actually have a formal diagnosis of MS, but my situation holds its own challenges that can’t be discounted. We all do what we have to. Every day I can move freely is a gift. For now, I’ve learned to live with the uncertainty and made peace with the fact that I may never have an answer.