Coping With a Multiple Sclerosis Diagnosis
Real People, Real MS Stories
Less than a year ago, when I was 43, I began having trouble with my short-term memory and problem-solving skills. As a pastor and a public school teacher, I need my brain to be in top shape, and I was used to it working hard for me. I also noticed that I was stumbling and less coordinated than I used to be.
I went to see a neurologist, who did an MRI of my brain. She found some white matter lesions, and she was concerned about their location. So I underwent a spinal tap. I did everything the doctors advised me to do afterward, but the recovery was horrible. I suffered from intense “spinal headaches,” an expected consequence of the procedure. I spent two or three days in bed, lying on my back, drinking plenty of fluids and as much caffeine as I could handle, to lessen the pain. Two weeks passed before the spinal headaches faded away. But although that pain was behind me, more pain invaded my body.
I hadn’t been formally diagnosed with multiple sclerosis yet, but the doctors had alluded that it was probably the cause. The symptoms of MS fell on me like a ton of bricks. I felt like I was standing on rocks all the time, like I had ball bearings under my feet. It wasn’t painful, but very uncomfortable. I began experiencing spasticity (basically, stiffness and muscle spasms) in my lower legs and ankles, and weakness in my hands. Fatigue invaded my day, and I had more trouble than ever with planning and memory.
In December 2012, I was officially diagnosed with multiple sclerosis. My symptoms have increased steadily, but I’m hoping that with treatment, I’ll soon be able to feel their effects lessen. I’ve begun seeing an occupational therapist to deal with my physical issues, and I take a daily subcutaneous injection of an MS medication using a spring-loaded syringe. Unfortunately, my doctor told me that it could be six to nine months before I start to notice any improvement on the MS injections. It won’t fix any damage that already exists in my body, but it will hopefully decrease further damage. I’m also on an anti-seizure medication, but I’m on the highest dose possible so we’re still looking into other options.
I don’t know what the future holds for me. I feel like all I have are questions. If/when the MS medication kicks in, will I go into remission? If so, how long will it last? If I relapse, what does that mean? Because I’ve only been dealing with this monumental life change for a few months, I’m still in the process of consulting different specialists, trying out treatment options, and learning about the disease. I’ve been seeing a neuropsychologist to help me process what this diagnosis means in my life. Since he’s a neuropsychologist, he understands the medical side of multiple sclerosis as well as the psychological aspects. But I’ve recognized that I need help dealing with the changes in my life, because sometimes they seem insurmountable.
To help with the pain in my feet, I now use a walking stick. By 10:30 am, I feel like I’ve been on my feet all day, but the walking stick reminds me to slow down and it helps me stay stable. I set aside time each day to administer my shot, and there are times when the fatigue overwhelms me and all I can do is lie down. But I know I’m not as bad as other MS patients, and I have to remind myself that no one knows what the future holds. Regardless of what my future is, if this has to be my life, I want it to be sanctifying for me and I hope to be a tool of grace for others.
What I Know Now: The one thing I’ve learned so far is that I need patience—and I need people to be patient with me. I’m slower, physically and mentally, but I still get from point A to point B. I haven’t lost reading comprehension, I just may have to go back and reread a passage or two. My neuropsychologist explained that there’s a difference between memory issues and recall issues. When your wife asks, “Did you pick up the kids?” and you slap your head and say, “Oh man, I forgot again!” —that’s a recall issue. But when your wife asks, “Did you pick up the kids?” and you answer, “What kids?” —that’s a memory issue. I don’t have memory issues; I just need more cues than I did in the past.
The one piece of advice that I took to heart was to do everything that the professionals in my life tell me to do. Of course, if what they suggest is really radical or unconventional, I reserve the right to question. But as a general rule of thumb, I remember that I’m not a neurologist or an occupational therapist or a speech therapist or a psychologist. I have these people in my life and the best thing for me to do is listen to them.
William Shontz lives in Erie, Pennsylvania with his wife and four children.
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