I have multiple sclerosis. It took a year before I could say it without stuttering and wanting to cry. Sometimes, I would tear up at the most inappropriate times, like at a Halloween party last year when I stumbled up the stairs. I feel a little badly for yelling at the friend, who laughed and said, “I thought you weren’t drinking.”
I nearly bit his head off when I told him it was the disease, not the soft drink in my cup causing me to stumble. He felt really bad. The problem was it wasn’t really him I was angry with. It was me. I was angry at the mistakes I made that postponed my diagnosis and treatment for three years.See, the symptoms that I would later find were the classic identifiers of MS, began three years earlier. I thought I had pulled a muscle in my back. I had chronic back pain, on the right side, and eventually, lost most of the sensation in my right foot. Well, actually, from the knee down on my right leg. I try to explain it to people, that it is something like when your foot falls asleep, but that really isn’t a good description.
My right foot is like a phantom. I know it’s there. I can see it and feel extremes in it…extreme heat, cold, pain, etc. If I leave it in the same position for a long time, I can tell exactly where it is. It’s just in movement that it becomes a problem. I can’t always tell if I’ve lifted it high enough to climb the stairs or if I have solid footing when I’m walking down an incline. Hand rails are my new best friends and I rely extensively on my eyes to relay the information to my brain, that my feet can’t quite get through the mess that is my nervous system.
So, three years after it started, I found out that the chronic weakness in my right side was not a pinched nerve as I had been led to believe. And, I could kick myself, because I was tested for MS when it first started and I didn’t question anyone when the initial tests came back negative. I’m sure my reaction was like anyone’s would be. When back acted up, I went to my doctor. He ordered back x-rays, did an exam, and referred me to a back surgeon. The back surgeon found some very early disk degeneration, but nothing that would be causing the problems I was having. He sent me to a neurologist. The neurologist did a nerve conductivity test and found that the nerves in my feet were working fine. Then, he scared me to death. He mentioned that my symptoms might be MS or some other neurological disease. He sent me to get an MRI.
Then, I made my first mistake. I mentioned that I am mildly claustrophobic. He offered to let me have the MRI done at a local open MRI center instead of the hospital. I happily agreed. The MRI was painless and I waited impatiently for the results. Eventually, he called, referred me back to my regular doctor and said the MRI was clean. My second mistake was not asking for additional testing, or getting a second opinion.
I returned to my regular doctor and he said that what I was experiencing was muscle spasms in my back due to sciatic. Basically, a pinched nerve. He recommended walking and losing 30 pounds and slow, stretching exercises like tai chi.
My third mistake was that I took some of his advice and then dropped it, assuming that a pinched nerve was just something I had to live with.
Three years passed and I had a couple flare ups during which my right leg was almost useless, but I fought it with the exercise and resigned myself to a life less mobile. Then, sitting on the couch watching television last summer, I started seeing double. I saw a ophthalmologist who ordered a repeat of my MRI from three years earlier. And he mentioned that open MRIs are sometimes less intense than tests performed in a traditional closed MRI.
That meant, he said, my test three years earlier might have missed something. He was right. The new MRI showed four lesions on my brain. A follow up with the neurologist and a lumbar puncture, the procedure commonly called a spinal tap, came back positive. I had MS and most likely had had it the entire time. This time I did the research. I found that I had the symptoms. The lack of balance and coordination, the loss of feeling in my right foot and eventually the double vision were all symptoms of MS.
This time, I got a second opinion and I demanded all the tests. While I kept hoping for a less life-altering explanation, this time I knew enough to ask the right questions and find out what was really wrong with me. And this time, I took every bit of my doctor’s advice. I started therapy with beta-interferon, a caustic, expensive drug with several different brand names thought to minimize the number of relapses related to the MS. I get my shot each Thursday religiously. I walk, even when I don’t want to, even when it makes me stumble, even when it means I sport bruises from losing my balance.
I talked to others who have MS and found out that the diagnosis does not mean I am doomed to a loss of mobility. The disease can be aggressive or not, and much of the result seems to rely on how aggressively I am willing to fight it. I got some great advice, just after I was diagnosed, from a lady who had been fighting MS for 30 years. She told me no matter how frustrating it is every day, to fight to maintain my ability to walk, to avoid giving in to a cane or a wheelchair for as long as possible. She said she gave in one day and has spent the 20 years since then in a wheelchair.
I try to remember her advice, especially after I trip and fall and feel like a fool. And, I try to pass on my own lesson to anyone who might have a serious health issue. If your symptoms seem related, maybe they are. If your doctor seems to be ignoring your concerns, find a new doctor, and if your doctor recommends testing, make sure you have the best testing available. You may not be happy with what you find out, but its better than going three years without being treated for what’s really wrong.