The ABCs of MS

My son started Junior Kindergarten last month. He’s been busy building the foundation blocks of literacy, so we’ve been reading lots of alphabet books. A is for Apple, and the like. This inspired me to write an MS alphabet. My MS alphabet may vary from one that another person living with MS may assemble, but my hope is that this is a fun way to share some of my knowledge about this disease that I’ve been living with for over 2 years now.

A is for AUTOIMMUNE

MS is an autoimmune disease. Autoimmune diseases occur when the body’s defense mechanism, the immune system, can’t tell the difference between its own cells and foreign cells. The result is that the immune system engages in “friendly fire” against the body’s own cells. There are more than 80 types of autoimmune diseases that affect a wide range of body parts. To quote Dr. Boster, MS is the autoimmune disease that affects the holiest of holies, the super computer that runs the body and the freeway that lets that super computer communicate with the rest of the body, the brain and spinal cord.

B is for BRAIN LESIONS

An MS lesion, also referred to as a plaque or scar, is an area in the Central Nervous System that has been damaged by the body’s own immune system. Within a lesion, there is loss of myelin, the fatty protective coating that covers the axon of neurons. MS lesions slow down or block electrical activity from transmitting along the affected nerves and this leads to MS symptoms. Some symptoms may be temporary and disappear when the inflammation subsides, while others may be permanent if scar tissue forms. Not all lesions produce symptoms. The size and shape of MS lesions can vary, and they can form in the brain, spinal cord, and optic nerves. The location of these lesions dictates which symptoms a person experiences, if any. To make an MS diagnosis, doctors need to see evidence of brain or spinal cord lesions.

Our bodies have a limited ability to repair myelin damage. Remyelination is an exciting subject of study as researchers work to develop new treatments for MS.

C is for COG FOG

Cog fog is the cute nickname given to the not-so-cute reality of cognitive impairment that many living with MS experience. This hasn’t been a significant symptom for me to date, but I do periodically find myself going “word fishing” or losing my train of thought mid-sentence.

Cog fog refers to a collection of common MS symptoms, including forgetfulness, trouble concentrating, issues with memory, attention, and information processing, and confusion. It is estimated that more than half of people living with MS will develop cognitive issues at some point in their disease course.

Diet changes and regular exercise are known to help improve cog fog symptoms in people living with MS. In particular, the addition of healthy fats (nuts, avocado, fatty fish) has shown promise. Working with an occupational therapist to develop strategies for managing cog fog symptoms can also help.

D is for DIAGNOSIS

MS is notoriously difficult to diagnose. It took 4 months from my first known symptoms, along with an MRI and a spinal tap, to reach a diagnosis. This is comparably blisteringly fast. Often it takes years. I was fortunate that my first MS attack was one of the more obvious forms of MS attack, Optic Neuritis. This allowed a much faster route to diagnosis than many encounter. MS is called a “snowflake” disease, it that each presentation can be quite unique.

In order to be diagnosed with Relapsing Remitting MS, the patient must present with lesions disseminated in space and time, meaning that the lesions must occur in multiple parts of the Central Nervous System and at multiple points in time. Clinical history could potentially meet this threshold, but usually MRI is used to make the diagnosis. A spinal tap and blood tests are also often required. The diagnostic criteria for MS have evolved over time, and currently the McDonald Criteria are used.

MS is a diagnosis of exclusion. Often neurologists will have to rule out a plethora of other potential causes of the symptoms observed before a diagnosis can be made.

E is for EYESIGHT IMPAIRMENTS

MS can cause a wide variety of havoc with your vision. 

I was diagnosed following an Optic Neuritis attack. Over the course of 24 hours, I experienced near complete vision loss in my left eye. While my vision returned, it never returned to normal. My vision remains cloudy or foggy in the affected eye. Optic Neuritis can attack just one eye at a time or both. Approximately half of all people living with MS will experience an attack of Optic Neuritis at some point in their disease course. 

Diploplia, or double vision, is another common visual impairment experienced by those living with MS. Approximately one third of all people living with MS will experience an attack of Diploplia at some point in their disease course.

Nystagmus is the involuntary movement of your eyes. They can move horizontally, vertically, or in a circular motion. Some people will notice objects seeming to jiggle, but often this symptom goes unnoticed and is only caught during eye exams. 

Both Diploplia and Nystagmus can be symptoms of Internuclear Ophthalmoplegia (INO). INO is quite common in MS. When there is a lesion on a specific part of the brain, it prevents the eyes from working together. For example, if you look to the right, your left eye may stay looking ahead.

Eyesight impairment can result from MS lesions in particular areas of the brain, or lesions on the optic nerves. 

F is for FATIGUE

Fatigue is a common and sometimes debilitating symptom experienced by people living with MS. While nearly everyone understands the general feeling of tiredness that can result from failing to get enough sleep, or maintaining an overly busy schedule, this is not the same as MS-related fatigue.

Fatigue caused by MS is often described as overwhelming and profound. It can strike suddenly and persist for days or weeks, making it extremely unpredictable and challenging to manage. This type of fatigue can be debilitating, causing individuals to feel physically and mentally exhausted. It can significantly interfere with a person’s ability to perform everyday tasks and maintain a normal quality of life. Moreover, fatigue caused by MS is not necessarily relieved by rest or sleep. Unlike ordinary tiredness, where a good night's sleep can help rejuvenate the body and mind, MS-related fatigue can persist even after extended periods of rest. This makes it a particularly frustrating and perplexing symptom.

G is for GADOLINIUM

Gadolinium or contrast is a chemical compound that is injected into a person’s vein during an MRI scan. Ordinarily, Gadolinium cannot cross the blood-brain barrier. However, during active inflammation in the brain or spinal cord, such as during an MS relapse or attack, the blood-brain barrier is disrupted, and Gadolinium can pass through and enter the MS lesion. This results in a highlighted spot on the MRI scan. A Gadolinium-enhancing lesion indicates that the patient is in a current attack or that the attack was recent. Older lesions will not enhance once the contrast is introduced mid-scan.

The safety of Gadolinium-based contrast agents has recently become the subject of concern. There is evidence that Gadolinium is retained in the brain. There have been reports of chronic health problems following administration of Gadolinium in some patients. However, there is little clinical evidence to show a direct correlation between Gadolinium and the side effects that some patients have alleged. If Gadolinium is being used, it’s important to understand the potential risks and benefits.

H is for HUG

No, we aren’t talking about the nice hugs that you might receive from a family member. MS Hug is a common MS symptom. It refers to the experience of pain or tightness around the chest and/or stomach. It can feel different from one person to another. It is a common first symptom of MS. It can be caused by spasticity in the intercostal muscles (the small muscles between the ribs). Alternatively, it can be cause by dysaesthesia (abnormal sensations caused by lesions in the nervous system).

I experienced severe pain in the intercostal muscles of my mid-back recently. I reported this to my MS Clinic, but my neurologist felt that it was unlikely that MS was the culprit. It was noted as a possible MS Hug flare to my chart. We will know more when the results of my next MRI return. I look at it with suspicion, because it lasted for a few weeks and my chiropractor had very little impact.

I is for IMMUNOSUPPRESSION

Because MS is an autoimmune disease, many of the treatments for MS involve the suppression or modulation of the immune system. 

J is for JOHN CUNNINGHAM VIRUS

The John Cunningham Virus (JCV) is a very common virus. More than half of the adult population has been exposed to it. It is not known how is spreads and there is no known prevention. For most people, it isn’t a big deal, but it is a big deal to anyone who is immunocompromised or immunosuppressed. JCV settles in the host’s urinary tract, bone marrow, tonsils, or brain, where it can remain for years. Most people with JCV will never know that they have it. However, in those with very weak immune systems, such as those living with HIV/AIDS, Hodgkin’s disease, leukemia, or lymphoma, and those taking immunosuppressing medications due to MS and other autoimmune diseases or to stave off rejection of an organ transplant, the reactivation of the virus can cause Progressive Multifocal Leukoencephalopathy (PML). PML is an opportunistic infection which damages the myelin sheath of nerves in the Central Nervous System and it can cause severe disability and death.

JCV+ is a term that you see a lot in the MS community. When you are taking certain Disease Modifying Therapies (DMT), your neurologist will closely watch your JCV antibodies titre in order to monitor PML risk. Tysabri, or Natalizumab, is the DMT most commonly linked to PML risk. PML is listed as a side effect for most of the newer DMTs, including the one that I am taking. However, it is considered a low risk with Kesimpta.

K is for KESIMPTA

There are a number of DMTs used to reduce MS activity. The DMT that I have been taking for the past two years is Kesimpta, or Ofatumumab. Kesimpta is a monoclonal antibody that targets CD20, a protein found on the surface of a particular subset of white blood cells called B cells or B lymphocytes. The drug binds to and destroys the targeted B cells. B cell killers have become a popular DMT option in recent years, with 4 on the market - Kesimpta, Ocrevus, Briumvi, and Rituxan.

L is for LHERMITTE’S SIGN

This is a common MS symptom, though thankfully not one that I have experienced to date. It is an electric shock-like sensation that occurs on flexion of the neck. This sensation radiates down the spine, often into the arms and/or legs. It lasts just seconds, but can be startling and very painful. When you have MS, your immune system attacks the fatty coating that protects your nerves (myelin). Without it, scar tissue forms and messages traveling in your brain and spinal cord are disrupted. Lhermitte’s sign is one of the symptoms that happens when those signals don’t move like they should. This symptom is not specific to MS, and can occur with any abnormality of the cervical spinal cord involving active inflammation.

M is for MRI

The invent of Magnetic Resonance Imaging (MRI) revolutionized the diagnosis and monitoring of MS. MRI uses magnetic fields to measure water in body tissue. Because different parts of the brain and spinal cord contain different amounts of water, MRI can be used to distinguish them and build pictures of the brain and spinal cord. Myelin is a fatty substance, so it repels water. This means that MRI can be used to measure the amount of myelin present. 

As MRI technology improves, better scanners will help radiologists and neurologists to detect even more subtle changes in the brain and spinal cord, allowing for better detection and monitoring of MS.

N is for NUMBNESS

Numbness of the face, body, arms, and/or legs is among the most common symptoms of MS, and it is a common first symptom leading to diagnosis. Numbness can range from quite mild and intermittent to being so severe and persistent that it interferes with a person’s ability to use the affected body part. It can bring a whole new meaning to The Weeknd’s I Can’t Feel My Face. I have persistent numbness and tingling in my left arm and hand. I have intermittent numbness and tingling in both feet, the left side of my face, and behind my left shoulder. I liken it to when a limb falls asleep and you get that pins and needles sensation, but if that’s a 10/10 intensity, my numbness and tingling ranges from a 1/10-3/10 intensity. It’s a similar sensation to having a limb fall asleep, but at a much lower intensity. This is my experience, but MS isn’t called a “snowflake” disease for nothing, and others have vastly different experiences of numbness.

O is for OLIGOCLONAL BANDS

The presence of Oligoclonal Bands (OCB) in a person’s Cerebral Spinal Fluid without a corresponding band in the serum sample can indicate inflammation in the Central Nervous System. A spinal tap can be used as part of the diagnostic process in order to aid in establishing that there has been demyelinating lesions disseminated in time and space. To learn more about the role of spinal taps and OCBs in MS diagnosis, read my blog post This Is Spinal Tap.

P is for PAIN

Neuropathic pain that feels like burning, freezing, prickling, stabbing, squeezing, or electrical shocks is a frequent symptom of MS. This pain can be acute or chronic. There are a few forms of neuropathic pain that make frequent appearances in those living with MS, such as Trigeminal Neuralgia, which is a stabbing pain in the face or jaw, Lhermitte’s sign (described above), MS Hug (described above), and pain associated with spasticity. Neuropathic pain is the result of nerve signals “short circuiting” when sent across nerves that have been damaged by MS.

Pain can also be caused by other symptoms. For example, if someone living with MS experiences leg weakness on one side, this may result in an altered gait which then produces pain.

It goes without saying that experiencing pain, whether during an MS attack or chronically, can interfere with daily activities, sleep, and overall quality of life.

Q is for QUALITY OF LIFE

MS symptoms, from cog fog, to fatigue, to vision loss, to loss of mobility, to pain and altered sensations can all decrease the quality of life for a person living with MS. Depression is known to be a comorbidity with MS.

There is no known cure for MS, but the current goal of MS treatment is to reduce disability and prevent disease progression. Since physical disability can be a predictor of reduced quality of life, sticking to a treatment plan may help improve or maintain the quality of life of those living with MS. Increasingly, we are also learning that good nutrition and consistent exercise can play an important role in maintaining a better quality of life when living with MS.

MS Canada issues Quality of Life Equipment Grants, which provide financial assistance to those requiring support with the purchase of mobility equipment and safety devices. When you donate to MS charities, you aren’t just supporting research into new treatments (though you support this too), but you are making a very real impact on individuals living with MS and their quality of life.

R is for RELAPSING REMITTING 

MS comes in a few different forms. Relapsing Remitting Multiple Sclerosis (RRMS) is it’s most common iteration at onset, with 85% of people diagnosed with RRMS at onset. An MS attack generally lasts for at least 24 hours, but usually for no more than 2 months, and it usually resolves fully or partly with residual symptoms. MS can also take the form of Primary Progressive Multiple Sclerosis (PPMS) or Secondary Progressive Multiple Sclerosis (SPMS). 15% of people with MS have a progressive form at disease at onset. Diagnosis of PPMS can be more challenging and relies more heavily on ruling out other causes of symptoms. After approximately 15-20 years, approximately half of those initially diagnosed with RRMS transition to SPMS. In this phase, there is gradual worsening of neurological symptoms between MS attacks. In many, MS attacks eventually stop altogether, but some have both relapses and progression.

Additionally, some will find themselves diagnosed with Clinically Isolated Syndrome (CIS) or Radiologically Isolated Syndrome (RIS) where there is not sufficient evidence for an MS diagnosis. I was briefly diagnosed with CIS before my spinal tap confirmed my RRMS diagnosis. CIS means that the individual has experienced a first episode of neurological symptoms caused by inflammation and demyelination in the Central Nervous System. RIS refers to an entity in which white matter lesions fulfilling the criteria for MS occur in individuals without a history of a clinical demyelinating attack. Someone diagnosed with CIS or RIS may or may not go on to develop MS.

S is for SPASTICITY  

Spasticity refers to stiffness and involuntary muscle spasms. It is one of the more common symptoms of MS. Spasticity is commonly treated with medication, like Baclofen, Botox, Valium, and others, and with physical and occupational therapy. Left untreated, spasticity can lead to serious complications, like immobilized joints or pressure sores.

T is for TINGLING

Paresthesia describes a feeling of tingling, numbness, or “pins and needles”. Everyone experiences this feeling from time to time, usually a harmless sign that a limb has “fallen asleep” and you need to shift your position or move around. When it happens often, is persistent, or is of unexplained origin, it can be a symptom of an underlying medical condition, like MS. As described above in N is for Numbness, I constantly experience a low-grade pins and needles sensation in my left arm and hand, and intermittently in other body parts. This paresthesia doesn’t significantly affect my use of the affected body parts, as evidenced by the fact that I finished a 10K run after my body decided that “pins and needles” in my left foot would make for a more fun experience from the 2K marker onward. However, I have developed weakness in my grip strength in my left hand as a result. Paresthesia can also feel like buzzing or like an insect crawling on you. I also periodically get these sensations. I can’t tell you the number of times that I’ve reached for my buzzing cell phone from my back pocket to discover that my cell phone wasn’t in my pocket and it was just more paresthesia.

U is for UHTHOFF’S PHENOMENON 

Uhthoff’s phenomenon is the temporary worsening of MS symptoms when an MS patient is exposed to heat. When you hear that MS patients should avoid hot tubs, saunas, hot weather, etc., it’s because many MS patients experience Uhthoff’s phenomenon. When the body temperature rises, nerve impulses are either blocked or slowed in the damaged nerves. When the body temperature returns to normal, the symptoms associated with Uhthoff’s phenomenon typically reverse. Back in the days before MRI machines and lumbar punctures, the hot water bath test was used as a diagnostic tool for MS. To learn more about Uhthoff’s Phenomenon and my experiences with it, read my blog post What is Uhthoff’s Phenomenon?

V is for VERTIGO

Dizziness, lightheadedness, and vertigo, or the sensation that the room is spinning, are each frequent MS symptoms. Vertigo can be caused by middle ear infections or damage, so it is important to rule out these causes. Where vertigo is caused by MS, it is due to lesions in the complex pathways that coordinate the various inputs to the brain that are required to maintain balance.

W is for WARRIOR

Many people living with MS identify themselves as MS Warriors. There are many posts on various social media platforms labeled with #mswarrior and similar hashtags. However, not all people living with MS identify with these hashtags. I do take on the “warrior” mindset. I like to think of my defence against MS like the defence of a football team. I want all components of my defence firing on all cylinders. I want the best defensive ends, the best defensive tackles, the best cornerbacks, the best safeties, and the best linebackers. For me, this means trying to ensure that I am doing all that I can to prevent MS attacks, from taking a highly effective DMT, to ensuring that my supplement regimen is meeting my needs, to running 5 and 10Ks, to lifting weights, to eating plenty of fruits, vegetables, and healthy fats. For me, the visualization of putting up a strong defence helps me process the diagnosis.

X is for X CHROMOSOME

The female-to-male ratio among MS patients is approximately 3:1. Yet, being male is an independent risk factor for worse disability progression in MS. To learn more about the role of sex in the development of MS and prognosis, read my blog post Man! I Feel Like a Woman.

Y is for YOUNG ADULTS

While MS can occur at any age, most people are diagnosed between the ages of 20 and 40.

Z is for ZINGERS

This is a common MS symptom, though thankfully not one that I have experienced to date. They are a sudden experience of pain that seems to come out of nowhere. They can feel sharp, prickling, radiating, burning, or even like electrical shocks. The painful sensations often strike the feet, hands, legs, or face. I have lots of odd sensations, but thankfully mine aren’t painful at this point.

Now you know my MS ABCs, I hope that you learned something new with me.