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Gray Matters: The Progression of Multiple Sclerosis

How to get a multiple sclerosis diagnosis, what to do, and the questions you should ask.

A doctor looks at an MRI scan of patient's head.

Key Points

Multiple sclerosis causes disruptions to the neural pathways in any part of the body—including the genitalia—dulling sensation and associated pleasure.
There is no single definitive test for MS.
If you're experiencing unexplained neurological issues such as numbness and tingling, tremors, bladder problems and a loss of balance, contact your primary care provider immediately.

I sat in a chair in the examination room of my neurologist's office. A few feet away, Madeline, the neurological NP at the practice, sat on a low-wheeled stool, tapping at a keyboard. My health record appeared on the screen, but it was clear she didn't have to refer to it. She knew what it said.

She turned to me and gently said, "The MRI showed demyelination."

"What does that mean?"

"You have MS."

Thanks to some pretty strong dissociative skills developed over years of dealing with trauma and my analytical nature, my response was muted. It would be more accurate to say I was mute.

I said nothing.

What I didn't know about MS

What I knew about MS was…not much. I had watched my mother's oldest sister slowly deteriorate from a sharp-witted woman unsteady on her feet to a slumping form in a wheelchair, barely able to talk. I had a cousin who walked well with a cane a decade into her diagnosis and one who needed a walker just a few years into hers.

I wondered where I would fall on the spectrum. How would it affect my life and my relationship with my man? I did not want his role to shift from best friend and lover to caretaker.

I didn't want him to have to drive me to doctor's appointments.

I didn't want him to have to move me from chair to bed and back.

I didn't want him wiping my ass.

I didn't think specifically about how MS affects your sex life but as time passed and I learned more about the disease, I realized it could impact that part of our lives in several ways.

Disruptions to the neural pathways can happen in any part of the body—including the genitalia—dulling sensation and associated pleasure.

Secondary symptoms of multiple sclerosis, such as fatigue, muscle weakness, muscle spasms, impaired mobility, and bowel and bladder incontinence can also make sex difficult and potentially embarrassing.

Finally, psychological and emotional effects can lead to a drop in self-esteem and contribute to depression, putting a further damper on intimacy.

The pathophysiology of MS

Multiple sclerosis (MS) is an autoimmune disease that affects the central nervous system (CNS), characterized by chronic inflammation, demyelination, gliosis, and loss of neurons. When considering these symptoms, think of a line of dominos— if one should tumble, they all eventually fall. Or not.

Before I could begin to make sense of my diagnosis, here are the first four questions I had to find answers to:

1. What is chronic inflammation?

When your body identifies an intruder bent on doing you harm, your immune system kicks into gear, sending out inflammatory cells to attack bacteria, heal damaged tissue, or otherwise deal with the threat.

For reasons researchers are only just beginning to untangle, your immune system can go wonky and send out inflammatory cells when you are not sick or injured. If it doesn't get the message that the crisis has subsided, the immune system will continue sending out a stream of soldier cells to battle a non-existent enemy, leading to chronic inflammation.

2. What is the blood-brain barrier?

To function correctly, brain and nerve cells need to get oxygen and glucose from the blood without becoming infected by any disease it carries or hormones produced elsewhere.

It's the job of the blood-brain barrier (BBB) to keep the CNS safe from these harmful elements, according to 2003 report.

"The blood-brain barrier is a layer of cells that cover your brain and spinal cord," said Joey Gee, DO, a neurologist at Providence Mission Hospital in Mission Viejo, California.

"Smoking, drugs, air pollution, and even gut health can cause the blood-brain barrier to weaken, allowing cells to pass through it and begin to attack the nervous system," Gee said.

In people with multiple sclerosis, immune cells infiltrating the central nervous system have been triggered to attack myelin.

In our domino scenario, this is one of the first to fall.

3. What is demyelination?

Demyelination is damage to the myelin sheath that covers the axons, the microscopic cables that carry electrical impulses from one neuron to another. Think of myelin as the coating that protects the wires of an extension cord.

When it's compromised, nerves become damaged and the axons can malfunction.

"Demyelinating can happen in other parts of the body, but it mostly takes place in the central nervous system, especially around the motor cortex area, which is responsible for fine and gross motor movement," said Tamika Haynes-Robinson, Ph.D., a neuropsychologist at Orlando Health.

"Depending on the location of the demyelination, you can experience problems with feeling, moving, seeing, hearing and thinking clearly," she added.

4. What is gliosis?

Glial cells play a vital role in the central nervous system, regulating metabolism, pH balance and neurotransmission. This is how neurons communicate with each other and muscle fibers.

Gliosis develops when your body pumps out more or larger glial cells. These renegade glial cells can create scars on your brain that impact bodily function.

This condition usually occurs after an injury to the brain or spinal cord—like demyelination.

When and where to seek help for unexplained issues

If you're experiencing unexplained neurological issues such as numbness and tingling, tremors, bladder problems and a loss of balance, contact your primary care provider immediately.

"Because so much of the testing for MS comes from ruling out other conditions, your doctor can help to monitor your symptoms as they progress," Gee said. "Your doctor may also send you to a specialist or neurologist for further testing, which will likely include an MRI of your brain and spine."

Denise Peterson, a resident of Naples, Florida, received an inconclusive result from her first MRI (magnetic resonance imaging). Her second revealed 15 lesions—areas of demyelination—in her cervical spine.

A diagnosis of multiple sclerosis

Like everything else with an MS diagnosis, there is no single definitive test that can determine if you have the disease. The best the medical community can do, at this point, is implement one of several strategies for narrowing down possible causes for the symptoms you're experiencing.

"Before I diagnose a patient with MS, I will look closely at their symptoms such as fatigue, vision problems and muscle spasms," Gee said. "An in-depth medical history also can provide clues."

The diagnostic process also usually includes a comprehensive neurological examination. An MRI is sometimes used to determine if lesions have formed on the brain and cervical spine.

Sometimes a blood test is used to eliminate the possibility of other conditions that have similar symptoms, including:

Epstein-Barr virus (EBV)
Lupus
Parkinson's disease
Sjogren's syndrome
Vitamin B-12 deficiency

The following are the criteria for diagnosis. All three must be fulfilled to confirm MS:

Evidence of damage (lesions) in two separate areas of the central nervous system—the brain, spinal cord and optic nerve
Proof that the injury occurred at different times
Ruling out other possible diagnoses

What are the types of MS and variants?

While no two cases of multiple sclerosis are exactly alike, the medical world breaks the disease down into four general types based on the presence, proliferation and progression of symptoms, according to a 2009 report.

Clinically isolated syndrome

Clinically isolated syndrome (CIS) can be considered a precursor to MS or may indicate other neurological conditions.

The term is used to name the first occurrence of neurological symptoms resulting from inflammation and demyelination in the central nervous system.

To meet CIS criteria, an individual must experience one of the following symptoms for at least 24 hours:

Arm and leg weakness, with one side of the body more affected
Ataxia (loss of control of bodily movements)
Bladder problems
Numbness in the face
Vertigo
Vision problems (optic neuritis)

Relapsing-remitting MS

Relapsing-remitting MS (RRMS) is the most common form of the disease. A person with RRMS experiences well-defined, separate episodes (relapses or exacerbations) of additional or increasing symptoms. Such occurrences are followed by periods of partial or complete recovery (the remitting part) when all symptoms disappear completely or may continue and become permanent, though the disease does not seem to progress.

Secondary progressive MS

Secondary progressive MS (SPMS) describes when neurological function progressively declines or a person becomes increasingly disabled over time. SPMS can follow an initial course of RRMS.

Primary progressive MS

Primary progressive MS (PPMS) is a diagnosis characterized by the progressive worsening of neurological function or increase of disability taking place concurrent with the appearance of symptoms, bypassing relapse or remission.

What happens if MS is not treated?

Even when symptoms of multiple sclerosis seem minimal or have a minimal impact on functional ability, early and ongoing treatment is essential for preserving function and lowering mortality.

"The life expectancy for someone with MS who doesn't receive treatment is about five to 10 years less than someone with treatment," Gee said.

This is why being aware of your body and symptoms is so important.

"Without treatment, your symptoms will worsen, which can decrease your quality of life unnecessarily," he added. "I remind my patients that MS does not have to stop you from living your life and doing what you love."

Online resources for MS

Many trusted websites are providing authoritative and useful information about multiple sclerosis. Here are four links to get you started on your journey: