From fear to hope—and the discovery he isn’t his disease
March is National Multiple Sclerosis Awareness Month. The nearly one million people affected by the disease each have a different story. MS is very challenging to diagnose and affects different people in different ways. What follows here is a story of fear, investigation, relief, treatment—and ultimately hope and excitement about the future. It’s my story.
You will not realize anything is wrong with me when we first meet. We can sit and talk and nothing will be out of the ordinary. I might moan a little when I stand up to leave, but nothing really indicates a battle is being waged in my body.
Multiple sclerosis is considered to be an immune-mediated disease in which the body’s immune system mistakenly attacks myelin in the central nervous system. Myelin is the protective coating around nerve fibers in the central nervous system.
My symptoms started in January 2006, as soon as I moved back to Chattanooga from southwest Florida. I’d lived in Fort Myers for about three years, and during that time, the summers were brutally hot and the winters were nice and temperate. Once I returned to Chattanooga, I started to experience numbness in my toes and fingers. I thought it was my body acclimating to the cold weather. I purchased a small heater and placed it near my feet until they started to warm up.
Spring came, but my symptoms persisted. I visited a few general practitioners, one who diagnosed me with peripheral neuropathy, a condition that often causes weakness, numbness and pain, usually in your hands and feet. The doctor diagnosed my condition without taking blood or administering diagnostic tests of any kind.
I sought out another general practitioner, who, once he ruled out diabetes, told me to get on with my life. I returned to him a few months later and he referred me to a neurologist. Finally, my questions would be answered.
Upon my initial visit to the neurologist, I was asked to perform a series of balancing tests and issued a pamphlet on “Foods that heal; Foods that kill.” Again, no blood tests were administered and no diagnostic tests were performed.
At this point, multiple sclerosis was the furthest possibility from my mind, although I still exhibited symptoms of numbness and tingling in my feet and hands. The popular concept of MS is of someone completely disabled, who needs the assistance of a wheelchair. I was led to believe my symptoms were the result of a dietary deficiency and decided to visit a nutritionist to get some answers.
By the time I was able to visit this general practitioner, who specializes in nutrition, it was the summer of 2008. I had gotten married the previous November, and was eligible for inclusion on my wife’s group health insurance plan. Once the wedding excitement started to dissipate, the weather began to heat up. Now my symptoms started to include blurry vision that sometimes whited out. One incident happened while I was driving. I pulled over to the side of the road and tried to calm down. Once my body temperature cooled, my vision was restored.
The fear was palpable. I waited nervously for this doctor to give me an exam and say everything was fine. Instead, he took my blood and urine samples and sent me to the neurologist down the hall. The blood results revealed a Vitamin D deficiency and a MTHFR genetic defect that meant my body could not absorb folic acid. Consequently, he suggested I start taking Vitamin D supplements and wrote me a prescription for L-methylfolate so my body could absorb folic acid.
Vitamin D is easy enough to buy at any corner drug store, but the L-methylfolate is priced like a prescription. Technically, it is not a drug, therefore some insurance companies do not cover it. The doctor suggested I take an over-the-counter, lower-dose version in the meantime.
My second neurologist didn’t waste any time scheduling an MRI. For those of you who have not had the pleasure of the procedure, MRI stands for Magnetic Resonance Imaging, and uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body. My scan took about 45 minutes and was not a problem since I’m not claustrophobic.
Within a few days, my doctor’s office called back and told me they needed to schedule another MRI. I showed up and went through the paces again. Right before I left the diagnostic center, the technician stopped and asked, “Has your doctor talked to you about the possibility of multiple sclerosis?”
I couldn’t get to my next neurologist appointment fast enough. The doctor looked over the results and noticed an inflammation, or lesions, on both in my brain and spine. But it still wasn’t enough to make a definite diagnosis. He scheduled a lumbar puncture, also known as a spinal tap. This is where they put you on a table and extract fluid from your spine by sticking a needle in your back.
The cerebrospinal fluid (CSF) collected during this procedure is then analyzed to look at the number and types of white blood (infection fighting) cells, the level of glucose, the types and levels of various proteins (especially immune system proteins called antibodies or immunoglobulins), and testing for bacteria, fungus, or abnormal cells.
A spinal tap that shows a large number of antibodies as well as oligoclonal bands (the pattern of immunoglobulins on a more specific test) or certain proteins that breakdown myelin suggests an MS diagnosis. Myelin is a fatty material that coats, protects, and insulates nerves, enabling them to quickly conduct impulses between the brain and different parts of the body. These findings indicated an abnormal autoimmune response within the brain and spinal cord, meaning that the body is attacking itself.
After almost three years trying to figure out the cause of my symptoms, I felt a sort of relief. Of the two types of MS, I was diagnosed with the relapsing-remitting form of the disease. I began immediate steroid therapy to fight the inflammation. I was then told to start interferon beta-1a (a type of protein) injections three times weekly. Rebif is the brand name of the medication manufactured by a biotechnological process from one of the naturally occurring interferons found in the human body. It helps my body fight the disease but doesn’t cure it.
Life tends to go on no matter what you deal with personally. My marriage amiably dissolved in late 2010, and I was left without health insurance. Since I was no longer in group coverage, I was unable to get health insurance because of my preexisting condition. Luckily, the maker of my medicine provided it for free.
Well before the Affordable Care Act, I was able to get advice and assistance from a community of supporters. I attended every MS event I could. I saw newly diagnosed people and people in wheelchairs. I saw local and regional neurologists taking the time out of their busy schedule to talk to us. I got to look around the room and realize I had support. Then I realized this fight had been going on far longer than my time spent in it.
There’s no better time to be alive to see scientific advancements in neurology, and MS specifically, than now. Neurology has gone from a primarily diagnosis-related specialty to a treatment-related specialty. My last MRI showed the lesions on my brain and spine were in significant remission. Today’s researchers are focused on actually ramping up remyelination to prevent degeneration of the nerve fiber.
Some people told me I shouldn’t write this article. That I should somehow be ashamed of my relapsing-remitting MS. I actually consider myself lucky. I was diagnosed and treated quickly and now I’m scheduled for another MRI so I can switch to a disease-modifying therapy. Some relapsing-remitting forms of MS turn into secondary-progressive forms of the disease. My sincere hope is the researchers help these people with secondary-progressive forms of the disease. All the while, I’m still incredibly thankful I can lead a normal life.
This is my story. There are many types and experiences of MS. On the flipside of bringing awareness to my condition, there are many neurological conditions much worse than mine. I personally know some who are in the throes of Alzheimer’s, Parkinson’s and Huntington’s disease. The only advice I can offer anyone is to listen to your body. If you think something is wrong, don’t wait. Find out. If a doctor tells you nothing’s wrong, get a second opinion. And once you figure it out, get it treated.
If I had ignored my symptoms, this might have been a very different story. I’ve now got a clearer picture of the future. I addressed a life-changing obstacle head-on by empowering myself through knowledge to one day beat this disease for good.
Find more information about MS at nationalmssociety.org. The 2015 Walk MS Chattanooga will be held Saturday, April 25. To participate, form a team, or for more information, contact Rebecca Polk, (615) 690-5349 or Rebecca.firstname.lastname@example.org