Louisville woman shares her journey with MS
I’ve been living with multiple sclerosis (MS) since 1998.
MS is an autoimmune disorder in which the body’s central nervous system — brain, spinal cord and optic nerves — is attacked. The immune system causes inflammation that damages myelin, the substance that surrounds and insulates nerve fibers. This causes messages within the central nervous system to be altered or completely stopped, resulting in a variety of neurological symptoms.
I hope that sharing my experience will help someone who may be having unexplained symptoms. I know it’s scary, but if you have MS, it’s important that you find out.
Symptoms I didn’t know I had
Looking back, I realize that some symptoms I experienced 15 years before my diagnosis could be attributed to MS. For instance:
- Unexplained vertigo. For a period of two to three days, every time I tried to sit up I vomited.
- Chronic fatigue. For about a three-week period one summer, every evening I went home from work so exhausted that I’d immediately lie down for a nap.
- Balance issues
- Occasional episodes of uncontrollable laughing or crying (pseudobulbar affect)
- Nausea and exhaustion while bike riding on a hot day
I suppose if I had experienced all of these things in a matter of days or even weeks, I might have considered that they were related symptoms. But since they occurred over the course of 15 years, it didn’t occur to me to look for a cause.
Until 1998. That is when I began to have problems walking, weakness in my legs and numbness that moved around from my left leg, to my right leg, to my torso. Eventually my primary care physician ordered an MRI (magnetic resonance imaging) of my brain, which revealed numerous lesions. A lumbar puncture confirmed MS, and I began giving myself weekly injections of the disease-modifying medication Avonex. I’m still using the same drug today. A number of different medications are available now, but Avonex has kept my disease from progressing, so my neurologist keeps me on it.
Early warning signs
- Vision issues
- Numbness and tingling
- Sensitivity to heat
- Lhermitte’s sign (pain that runs down the spine like a mild electrical shock when you bend your neck)
- Bowel or bladder trouble
- Sexual dysfunction
- Stiff muscles and trouble moving your body
- Difficulty speaking
If you experience symptoms
“If a patient is having typical MS symptoms, then a neurological consultation is suggested,” said Roy Meckler, M.D., neurologist with Norton Neuroscience Institute. “If the symptoms persist and are not explained by other causes, the neurologist probably would order noninvasive diagnostic studies, such as an MRI. There is a new blood test for MS available with good sensitivity and specificity, but unfortunately it is not yet covered by insurance.”
For those with MS, Dr. Meckler stressed the importance of maintaining a higher vitamin D level than the typical recommendation. According to the National Multiple Sclerosis Society, “research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS, and studies are underway to determine if vitamin D levels influence MS disease activity. Recent research also points to a possible role for vitamin D in neuroprotection and myelin repair.”
Norton Neuroscience Institute
Recognized as a Center for Comprehensive MS Care by the National Multiple Sclerosis Society
Today and the future
Now, at age 61, I’m more bothered by cognitive issues than physical issues. Before MS, I had an excellent memory. Not so much anymore.
I have to be careful when I walk to avoid tripping. This is caused by foot drop, a difficulty many MS patients experience.
I inject Avonex weekly and take vitamin D religiously.
I try to keep a positive attitude. In many ways I’m fortunate. I’ve always had health insurance and access to disease-modifying therapy, as well as excellent medical providers. I’ve never experienced pain due to the condition. Most important, my boyfriend at the time of my diagnosis (now husband) was not scared off and has stayed by my side through it all.
Getting help for MS
There are many resources to support MS patients and their families in the Louisville area. The Norton Neuroscience Institute Resource Center focuses on bridging the gap between managing care and improving quality of life. The staff provides educational, therapeutic, support and exercise programs, and can assist patients with:
- Access to medical care
- Social Security Disability Insurance resources
- Nutritional counseling
- Financial challenges
- Referrals to community resources and home health agencies