I know this might sound ridiculous, but for me, moving to Hawaii may have literally saved my life. Let me tell you how. Two years ago, just two months after I walked away from my 6 year marriage, I was diagnosed with Multiple Sclerosis (MS).
Things had become unbearable in my marriage and I had shutdown. I refused to fight, I no longer put words to my feelings because it only seemed to escalate matters. I was tired. What I didn’t realize was the damage I was doing to my body and how suppressing my feelings and internalizing everything was causing my health to fail.
One morning I woke up and the entire left side of my body was numb. After about 8 hours of testing in the ER, I was referred to a neurologist. After 6 MRI’s and a Lumbar Puncture it was determined that I had MS. My neurologist went over several treatment options with me. We decided on an oral medication, as I was opposed to administering shots to myself twice daily. She quickly went over the side effects and cautioned me, over the length of time the drug had been on the market, four people had contracted a virus and it had been fatal.
We hear the warning of side effects on every pharmaceutical drug commercial we see on TV, yet we are willing to take a risk now and then. She assured me the likelihood of something like that happening to me was slim to none. However, I now know that wasn’t true and she had no basis for making that judgement.
Here's how I’ve concluded that Hawaii may have saved my life. After making the biggest decision, picking up my entire being and moving 4,204 nautical miles across the ocean, I was finally at peace. That’s what I’d prayed for most, peace. God provided that for me in the most beautiful way.
Once I was settled, I set out to find a local Neurologist. When I went for my initial appointment he asked what medication I was using to manage my MS. I told him I was taking Tecfidera. He asked me how my previous doctor had come to settle on that treatment plan. I shared the decision-making process with him. He seemed a bit unsettled and then he asked if I’d been tested for the JC Virus (John Cunningham virus). I had no idea what he was referring to. He proceeded to tell me I needed to be tested to see if I’d ever been exposed to this virus. If I hadn’t, there was nothing to worry about. However, if I had been exposed he would want me to be taken off the medication immediately because the risk was too great.
According to the World Journal of Neurosciences, between 70 and 90 percent of people in the world have the virus. The average person carrying the JC virus will never know and is unlikely to suffer any side effects as a result of its being in his or her body. The JC virus often attacks when a person’s immune system is at its weakest—a weakened immune system can no longer fight off invading viruses. It’s the perfect opportunity for the JC virus to awaken, cross the blood-brain barrier, and begin attacking the brain.
That infection is called progressive multifocal leukoencephalopathy (PML). People with MS are at an increased risk for PML because their immune system is often compromised as a result of the condition. PML can be disabling, even fatal, as sited on healthline.com. I know that’s a lot to digest but it’s an important piece of the puzzle. I knew that PML was listed as one of the potential serious side effects of Tecfidera but I didn't know being exposed to the JC Virus could create the recipe for disaster and that there was a test for detection to see if I was at greater risk.
A couple of days ago I received my test results, which read POSITIVE. What I am struggling to understand is, why wasn’t I told by my previous doctor that I should be tested for the JCV anti-body?
Wouldn't it make sense to test before placing me on this medication to ensure I hadn’t been exposed? A simple test that could potentially save my life.
As you can see, my move to Hawaii may have literally saved my life. I’m loyal, almost to a fault when it comes to brands and doctors. I would have continued to take the medication because, I must say, it has been very effective in managing my MS. However, the risk is far greater than a price I am willing to pay. I’ve been taking this drug for two years now. I am grateful to God that it didn’t cost me my life. I am also grateful for my Neurologist here in Hawaii who was honest enough to say, this drug and that virus could potentially end your life. Thank God for Hawaii.
March is National Multiple Sclerosis Awareness Month. The video of my initial diagnosis can be found on my YouTube Channel @MsKimmoly