A Journey with Multiple Sclerosis

A Journey with Multiple Sclerosis

By Sharon Bosch

 

I’m embarking on the arduous undertaking of describing the last 13 years of my life so that others might gain insight, understanding, and hope from my journey.

 

I married my best friend and husband in 1998 and became the proud mom to our beautiful son in 2003. I’m a stay at home mom, but not by choice – by circumstance. On June 4, 1999, my physician diagnosed me with multiple sclerosis (MS). MS affects people in varying degrees. Some can continue to work, but for others, the ravages of the disease make working and a career impossible.

 

In the past, prior to diagnosis, I never just sat around idly, burning up daylight and wasting time. I truly enjoyed working. But – after diagnosis, I simply couldn’t work. I became a new Sharon – an ill Sharon. I could have balanced family life and a thriving career quite well; at least I think I could have. MS made it impossible for me to even try.

What Is MS?

 

The term, multiple sclerosis, means many scars or lesions. MS is a demyelinating, autoimmune disease that affects the central nervous system (CNS). I’ll give you a brief overview of the disease without boring you with all the medical jargon. Although researchers aren’t clear on the exact cause, the most common theory is that a gene defect or a virus triggers the physiological process that develops into MS. The disease damages the myelin sheath (demyelization) that surrounds and protects nerve cells. The propagation of nerve signals slows down and even stops in some cases.

 

The nerve damage, or demyelization, is caused by inflammation. Much like your body’s immune system fends off a cold, by attacking the invading virus, the body’s immune cells attack the nervous system, causing the inflammation. The inflammation can crop up anywhere along the CNS (e.g. brain, spinal cord, optic nerve).

The Nature of the Beast

 

As of 2012, approximately 2.1 million people have MS worldwide, making it the most commonly diagnosed demyelinating disease among young adults. Of those, 400,000 of them are Americans. Those numbers tell an astounding story: fully 1/5 of those with MS are US citizens. The average age of diagnosis is between 20 and 40 years of age. Although men can certainly develop MS, most of the MS population is female.

 

Episodes of the disease can last a day to several days or more and can occur at different locations of the body each time and with varying severity. The disease goes into remission for periods of time when patients do not experience symptoms, but can pop up again without warning.

Common Symptoms of MS

 

·         Numbness, tingling, or burning sensations in the hands, feet, or legs. Some people experience these symptoms all over their bodies.

·         Complete loss of sight in one or both eyes, loss of peripheral vision, loss of visual acuity (occurs when the inflammation occurs on and around the optic nerve)

·         Loss of balance, unsteady gait, spasticity

·         Heat intolerance – the core body temperature of those with MS rises quicker than in healthy people, due to issues with the thalamus gland (an organ involved in temperature regulation).

·         L’hermitte Syndrome - feeling of electrical shock that runs down the arms and legs when bending the neck to the chin.

·         General loss of coordination

·         Slurred speech

·         Bladder control issues

·         Bowel control issues

·         Cognitive difficulties

·         MS Hug – a tightening around the mid-section, which can mimic the feeling of a heart attack, or feeling as if your clothing is too tight, when it actually is not.

 

Those represent the most common, basic symptoms of MS, but there are actually a lot more of them – too many to list as I need to get on with my story. At least you get the gist; MS is no picnic.

Simple Girl, Proud Woman, Young Wife

 

I grew up in Gravesend Brooklyn – born, raised, and proud. If you were to hear me speak, I’m sure you’d detect an unmistakable accent. We were a middle class family. I had an Italian mom and a dad of Polish, Irish, and German heritage. Everyone knew everyone else in our tight-knit community. I had the typical childhood illnesses (i.e. strep throat, chicken pox). It seems like I fell ill more often than most kids in my neighborhood, but it is what it is – people just dealt with it and moved on.

 

I did the normal teenage things; perhaps a little more than some, but overall, I wasn’t a bad kid. We went out, had fun, loved clubbing, etc. I met my husband at a club on Long Island. I was 22 and he was 25. We lived together about six years before marrying. We both worked crazy hours to save money and put our wedding together, while still maintaining a household and paying the bills.

 

About six months before we married, I noticed my left hand went numb while taking a fairly hot shower. I thought it a bit odd, but due to the stress of planning the wedding and all, I chalked it up to nervous bride syndrome. The numbness and tingling only happened in my left hand and went away with time.

 

We married and resumed our lives. I walked to and from work every day, six days a week, which kept me in good shape as did all the running around in the office.

Trembling and Stumbling

 

Suddenly, I began having issues with walking. I walked like a drunken woman – swaying side to side, tripping over my own two feet. I even had trouble remembering how to perform my work duties; duties I had done day in and day out for years. The numbness returned too. This time, it never went away. I felt exhausted constantly. Regardless of how much sleep I got, it was never enough.

 

I visited my family doctor and I explained my symptoms to him. He suggested that I see a neurological specialist. A week later, I met with my neurologist. After the typical battery of tests, he ordered a blood panel to rule out Lyme disease, Lupus, and other diseases detectable in the blood.

 

It all came back clean.

 

Next, he ordered an MRI with contrast. In this procedure, a huge machine takes images of the brain. The contrasting agent illuminates any brain lesions present. My brain lit up like a Christmas tree. Not good!

 

I then had to undergo a spinal tap, also called a lumbar puncture (LP), to check for protein in the cerebrospinal fluid. Ding, ding! Of course, my fluid had protein present, indicating a blood brain barrier breach and multiple sclerosis. I also went in for a Visual Evoke Potential test to see if my optic nerve had suffered any damage. Ironically, I passed that one.

MS Hits Hard

 

Doctors officially diagnosed me on a warm Friday afternoon in June of 1999. That Monday, June 7^th, I entered the hospital as an inpatient for my first steroid treatment. The steroid treatments help MS patients recover from the episodic attacks of the disease. My medical team gave me 1,000 cc (milligrams) of intravenous (IV) steroids once a day for three days. They instructed me to taper off my dosage by mouth over a three-week period and slowly recuperate at home. Six weeks after my diagnosis, I went back to work, thinking I could do all the things I did before my illness.

 

Big Mistake!

 

Six weeks after returning to work, another relapse hit me. Hard. I landed in the hospital with optic neuritis (inflammation of the optic nerve) and received 14,000 cc of IV steroids. Doctors then told me I have an aggressive form of MS and that I could no longer work. I quit with a heavy heart and much trepidation.

 

At the time of my diagnosis, MS patients had only three medications available to abate the progression of the disease: Avonex^®, Betaseron^®, Copaxon^®, and symptomatic medications.

 

I started my first interferon medication, Betaseron^®. It’s a daily subcutaneous (sub q) injection with a small needle. Side effects include flu-like symptoms, which hit me like a freight train. The purpose of this medication is to slow the progression of the disease. I was still in the throes of relapse and heavy symptoms while on the medication. My body built up antibodies to the drug, so doctors took me off of it within the first year.

A Warrior Emerges

 

Next stop, Copaxone^® -- not an interferon, so comes with few side effects, but still a protein-based drug. I did those injections faithfully for about a year or so. Then I became pregnant with my son and stopped immediately.

 

After giving birth – one of the most joyous occasions of my life – I had a relapse. This is par for the course after having a baby. I did at-home IV steroid treatment and didn’t return to using Copaxone^®. My son needed his new mom and I did OK.

 

As is my nature, I tempted fate one too many times. I fell, stumbled, tripped, dropped things, and lost some vision in my left eye (again). If you remember, I first felt the numbing in my left hand well before getting a diagnosis. Most MS patients have one side that’s worse than the other. The left side is my bad side.

 

When I visited my neurologist, he chastised me for not taking my medication treatments over the past four years. I had more active lesions than ever and went downhill fast. My doctor started me on Rebif^®, another, newer, interferon that’s stronger than Betaseron^®. Interferons give me flu-like symptoms, meaning I felt like crap – again.

 

Three years after that, I moved on from my neurologist to an MS specialist and he wants to put me on a newer, highly promising medication. Patients take the medication, called Tysabri^®, via an IV infusion once per month.

 

But there’s a catch. Isn’t there always a catch?

 

Not everyone is a candidate. Those who carry the JVC-6 virus cannot take the drug. I’m waiting to see whether I carry this usually harmless virus. Sadly, over 200 people have died using Tysabri^®. These people carried the virus and developed an untreatable brain disease called Progressive Multifocal Leukoencephalopathy (PML), due to viral interaction with the drug.

 

So, I wait. I wait to find out if I’m a candidate. If I am, I’ll switch very soon. It’s frightening, and I can’t say I’m all that enthused, but MS takes many things out of a person’s control. I’m no different. I’ve got to do what I’ve got to do.

 

That said, many things are in your control as an MS patient. MS cannot take away your identity, your values – your core. You are strong, intelligent, a mom, a dad; you’re anything you want to be. You may need to do things differently, but you can still do them and live life on your terms, your way, to the best of your ability. I say, “Fight the good fight. The warrior’s battle. You don’t have time for anyone or anything that gets in the way of LIVING!”

 

Sharon Bosch

MS Warrior and Survivor