Linda’s Story

“My husband used to think that I was just stretching really hard and he’d ask what I was doing. He has finally realized that I have no control over these spasms and he is quicker now to offer assistance or keep me from going out of the chair or whatever I’m sitting on.”

Linda from Kentucky was formally diagnosed with multiple sclerosis about four years ago, but she and her physicians suspect she has been living with the disease for much longer – about 15 to 20 years.

Multiple sclerosis, also known as MS, is the most common neurological disorder diagnosed in young adults. It is an autoimmune disease of the central nervous system that damages or destroys the protective covering (known as myelin) surrounding the nerves, causing reduced communication along the nerve pathways between the brain and spinal cord to other parts of the body. Symptoms of MS vary for each individual, but in addition to spasticity, common symptoms include visual problems, overwhelming fatigue, difficulty with balance and coordination, and various levels of impaired mobility. Although a cure has yet to be found for MS, several FDA-approved disease-modifying treatments are available to reduce disease severity and delay progression.

The first time Linda noticed her MS-related spasticity was about two years ago – her spasms were mild and scattered, yet these did not consistently bother her on a weekly basis. However, as time went on, Linda noticed a major change in the level of spasticity she was experiencing.

Linda’s spasms typically affect her legs and hips in the morning when she first awakens, but she has also noted problems during the day with her arms, shoulders, and even pain in her ears that is akin to yawning for an extended period of time.

“It has gotten to the point where over time, not every day but at least a couple times a week, the spasticity is so severe I cannot get up without assistance,” says Linda. “On days like that I make sure my walker stays close or I can have more falls than I care to think of.”

Linda explains, “As my spasticity progressed, it became debilitating. My body, especially my legs and arms would not respond to my will at all. My legs would stay stiff and stretched out, refusing to bend at the hip, knee, or ankle. On numerous occasions, I would slide right out of chairs without being able to stop my decent to the ground because my legs and arms refused to unbend and do as I had wanted them to. Until you experience this type of severe spasticity, it is very hard to understand how debilitating it can be.”

Despite her worsening muscle tightness, Linda has hope that starting a new treatment recently will improve her current situation. In addition to symptom-management strategies and medications designed to reduce the effects of spasticity, disease-modifying therapies can also act as a way to reduce the severity of significant MS symptoms such as spasticity. Linda is glad that groups such as the Spasticity Alliance are working to bring awareness to MS symptoms — including spasticity – which are often invisible to others who do not experience such symptoms themselves.

 

Story from Multiple Sclerosis Association of America