“The Monster in My Brain” One Woman’s Struggle with Multiple Sclerosis

“I was walking across the kitchen carrying a hot iron, and it fell out of my hand. I picked it up and dropped it again. After trying several times and dropping the iron, I knew something was horribly wrong.”

Thus, begins the story of the struggle of Mrs. W. with the disease that was to alter her life forever, multiple sclerosis.

This article will be informative and moving as we take an in-depth look at MS and the personal experience of one brave woman.

The Statistics of Multiple Sclerosis

Unfortunately, Mrs. W.’s story is not unique.

Estimates are that 2.3 million men and woman to live with the diagnosis of multiple sclerosis globally and can strike at any age.

However, the highest prevalence is in young adults between the ages of 20 and 35. Woman are more likely to be diagnosed with MS than men, and the causes of the disease are not well understood.

MS seems to affect Caucasians living in the regions farthest north of the equator more than any other demographic group.

This fact may be because sunlight is vital to the formation of Vitamin D production in the skin of humans. Because the northern regions of the globe offer far less sunlight, a lack of this vital nutrient is believed to be a risk factor in the development of multiple sclerosis.

There are two known types of multiple sclerosis. Secondary progressive MS (SPMS) and relapsing-remitting MS (RMS). Relapsing-remitting MS is the type of multiple sclerosis that struck Mrs. W.

The True Story of Heroine

Mrs. W. is a Caucasian woman who was born and raised in Illinois, USA.

“I was 30-years old, married and had four children ages 2-16 when the doctors sat me down and told me I had multiple sclerosis.

My condition had been steadily worsening for several weeks, making me feel weak, and I often lost my balance.

The doctor said I would not die from the disease immediately, but that my worst enemy was pneumonia.

When I asked the doctor, he told me there was no cure for MS, but the disease usually is slowly- progressing.

Multiple Sclerosis Left Me Bedbound 

This was in 1960, and there were not many drug options to help me.

My doctor also told me that some lucky people diagnosed with multiple sclerosis had mild cases and didn’t need much treatment.

It was soon apparent that I was not one of the lucky ones.

Within two months of my diagnosis, I was struck down by an acute attack of MS and quickly became bedbound. “


The History of Multiple Sclerosis

The history of multiple sclerosis begins very early in the history of medical science. The first drawings in 1838 from autopsies showed what we now recognize as destruction done to the brain by multiple sclerosis. However, it was Jean-Martin Charcot in 1868, a profession at the University of Paris, who had carefully examined a young woman with a tremor.

After the young woman’s death, Charcot performed an autopsy on her brain and found the plaques we now recognize as a hallmark of multiple sclerosis.

MS was first recognized as a specific disease by Dr. Walter Maxon in 1873 in England and Dr. Edward Seguin who was working in the United States.

By the end of the 19th century, a great deal had been learned about MS by careful observations. It was then that it became evident that the disease struck more women than men, and that it produces several different neurological symptoms.

Multiple Sclerosis and Myelin

With observations, researchers were able to identify these neurological symptoms accompanied an acute attack of multiple sclerosis. The symptoms included vision loss, paralysis, numbness, and difficulty in walking. After World War II when the globe could once again turn its resources towards research, much more information about MS became known.

However, the researchers were puzzled. The symptoms of the disease seemed to worsen and then to reverse itself. There was no discernable pattern to the attacks, and that made it very difficult to diagnose. Even today with our high-powered technology, diagnosing multiple sclerosis is still very difficult.

We now understand that the nerves cause these acute attacks followed by what appears to be a reversal of symptoms in the brain and spinal cord slowly losing their ability to transmit signals.

Myelin, a fatty substance that covers the neurons of the brain, is necessary for the brain cells to make good connections. Myelin acts like the coating on an electrical wire offering insulation to help the current flow well.

Like in electrical wiring, if there are holes in this insulation, the signal cannot propagate a current and a short will occur.

These breaks in the brain’s signaling ability prevent the brain from connecting to the rest of the nervous system resulting in loss of contact with it.

When the signals slow or stop, symptoms worsen for the person who has MS.

Diagnosing Multiple Sclerosis

Myelin was first identified in 1878 by Dr. Louis Ranvier. However, it was not until 1925 that Lord Edgar Douglas Adrian established that myelin classified the role of myelin as a nerve conductor. He realized that the loss of myelin kept nerves from transmitting impulses efficiently.

In 1960, the year Mrs. W. was given her MS diagnosis, The National MS Society came into being. They funded a panel of experts to draw up standard guidelines for the diagnosis of multiple sclerosis still used today.

Her doctors examined the only treatment the doctors who examined Mrs. W. had at that time which likely followed the recommendations of the newly formed MS Society to determine her diagnosis and treatment.

However, treatment options were minimal. The doctors of that decade had in their arsenal of treatments rest and remaining alert for infections that would threaten their patient’s lives.

Tragedy and MS

Mrs. W.’s story from the 1960’s was typical for that decade.

“I was bedbound for almost two years. I had to lie flat on my back and had very little control over any of my muscles. It was during the first six months of my confinement that tragedy struck my family.

My oldest daughter Myra was sixteen and had established her first job. She worked as a sales clerk in a local mom and pop dime store. Myra was very proud of her new-found independence, and I was elated to see her so happy with her life.

Since my diagnosis, Myra and I had shared a very close relationship.

I began to look forward to the evenings when, after she would return home from work, Myra would sit by my bed and tell me funny stories about customers. We would chuckle together until we had tears running down our faces.

Since I was unable to wipe away my tears, Myra would do it for me.

Then on a Wednesday evening in early August of 1965, we received the news that would open a wound in my heart that would never heal.

Myra had been working at the store and was laughing with a friend when she accidentally inhaled a wad of chewing gum.

Back then the public did not know how to help a choking victim effectively. The owner and his wife tried all they knew to help, but Myra soon passed out and then died.

Because of my condition, I was not able to attend Myra’s funeral. I lay alone in my bed while the family was gone weeping.

Since I had no one to wipe them away, my tears ran down the sides of my face and soaked my pillow.

I wept for many weeks after the loss of my daughter. So much so that grooves formed in my skin on the sides of my face. You can still see them today.”

Mrs. W’s tragic story illustrates one significant point that sometimes gets lost in the statistics and research on multiple sclerosis.

Multiple Sclerosis is a Very Human Disease

MS is not a disease that attacks robots, nor is it a rare disease striking 110-140 out of every 100,000 people.

Multiple sclerosis is a very human disease and affects real people. So, finding a cure for multiple sclerosis is not just a race for a Nobel Peace Prize, it is a desperate search to prevent suffering from this devastating disease.

Treatment for Mrs. W. was extremely limited in the 1960’s.

It was not until the 1970’s that steroids were used to suppress to suppress the immune response thought to be a considerable cause of MS symptoms.

The first drug to treat MS found through animal trials, and since then many other drugs have been developed.

The Treatment Options for Mrs. W.

“The only treatment I received when in the first two decades after my diagnosis was physical therapy. However, I could not tolerate long sessions while I was bedbound. Then, after two years, I was finally well enough to get up into a wheelchair. I have never walked again.

Since those horrible days, I have had several attacks but none as horrendous as the one that left me bedbound.

Today I cannot propel a manual wheelchair, so I use an electric one instead. Now I can put on my makeup and feed myself, but I need extensive help when bathing and dressing.

I now live in a long-term assisted living facility where I receive monitoring of my condition 24-hours per day.

Living with multiple sclerosis, what I call the monster in my brain, has been hard. I missed the rearing of my children, having a healthy life with my husband, and even grieving with my family over the death of Myra.

However, as the saying goes, life goes on.”

Hope for Patients Living With Multiple Sclerosis

As was stated at the beginning of this article, Mrs. W.’s battle with multiple sclerosis is not unique. Every year 10,000 new cases of MS are diagnosed, that is 200 per week. The disease brings to its victims a lifetime of disability and powerlessness to stop their slow decline.

However, there is a reason to hope.

Currently, there are several prescription drug options available. They are useful but not for all cases of MS. Also, these drugs can have some severe side effects require close monitoring.

On the horizon are many different treatments as research continues. With this research, there is high confidence that one-day humanity will conquer the monster that can attack our brains.

Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.

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