Sometimes we find it difficult to see our parent’s perspective on life as I have with my mother, during the times she grew frustrated with day-to-day duties. Not until recently have I taken the time to understand the last few years of her frustration rooted from a disease we commonly abbreviate: MS.
As much as we can be uncertain how to spell Multiple Sclerosis off the top of our heads, those who result in being diagnosed live in nothing but uncertainty. Although Americans are being diagnosed with MS every hour of the day, we cannot really recollect the journey they have been on to reach that point.
I did not understand this journey until I stepped into my own mother’s shoes. The year of 1998 indicated the first part of her journey, described as a ‘crushing blow,’ after collapsing at work. Thereafter, the cluster migraines began, sinus infections and weakness that would buckle her knees.
However, my mother did not fit the textbook symptoms of MS, leaving her to be passed around like a hot potato between her orthopedist and neurologist. The fact she had displaced discs in her spine and a weakness disabling her left side, the doctors could only initially offer a leg brace as a solution.
The diagnosis of MS is not only tricky, but the perplexing disease creates various diagnosis. MS is a disease that destroys the sheaths responsible for protecting axons around the brain and spinal cord. In other words, a shield necessary for nerve cells to communicate properly. When these sheaths are destroyed, the scars (aka lesions) become traceable in a Magnetic Resonance Image (MRI) testing.
Not only did my mom’s MRI results display lesions, but two spinal taps returned positive, labeling her as ‘lab probable’ because she still didn’t fit the textbook symptoms.
“Not every disease is textbook,” my mom said.
She has called it the ‘hidden disease’ because of all the vague symptoms, and began to give up after going through numerous tests such as MRIs, ultra sounds, Electroencephalogram (EEGs) etc. – leading her to feel like a hypochondriac. Doctors were trying to find every reason why she didn’t have it versus a case of possibility.
Three neurologists later, lucky #4 was able to spot a lesion above her ear and commented “You have MS!” Six years of an agonizing journey with no direction had finally pinpointed a diagnosis to explain a little more than the surface of why she would be frustrated on a day-to-day basis.
I, too, would be frustrated living an unexplainable life of tremors spawned from any physical pain in contact with or within the body. My mother has buckled at the slightest touch of my hand on her shoulder or her head starts to wobble uncontrollably from pain triggered from as something simple as a headache.
Please note, my mother is just one subtype for MS, where she currently does not experience exacerbation. Those subtypes that do experience exacerbation must be treated to avoid subsequent attacks that progressively damage the brain. Medicine to treat MS comes with risk: adverse effects and lack of research.
Usually, a patient is diagnosed with multiple sclerosis between 20 and 50 years of age. Awareness must be raised for MS to eliminate the journey of complicated diagnosis, and work towards a cure that research can validate as safe.
For myself, I am glad I took the first step to become aware by just asking for my mom's side of the story to learn and understand the impact of this cause.
Do you have an inspirational story that you would like to share with the YourCause.com team? Write us at info@yourcause.com.
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