Category Archives: MS Symptomology

Keeping an MS Medical Journal

When I first developed multiple sclerosis, it was so vague and weird that I couldn’t quite describe the sensations to others, particularly to my family and friends. How do you explain fleeting neurological symptoms that sound like you’re having a stroke? Explaining to my then-primary doctor what was going on seemed even more challenging: he wanted to know WHAT kind of numbness I had. Did it feel like pins-and-needles or did the area lack ALL feeling? When did it come and when did it go? Was it restricting any of my activities and did it ever become painful? At this point I began a medical journal where I logged symptoms, durations, my feelings about these symptoms, dates, things that worsened these symptoms and so on. This journal has become my guide to my history with multiple sclerosis and a basic reference that I bring along with me to my doctors’ visits.

Keeping an MS medical journal is easy. Here’s what I find helpful:

Narrow a Medical Journal Down to One Topic

If you have more than one ailment— many of us do— then separate the problems into different journals within a notebook. Keep MS information in one area and (for example) low blood sugar, or hypoglycemia, in another section. Sometimes it’s difficult to tell where symptoms are coming from (particularly in the case of multiple autoimmune diseases) but if the illnesses are unrelated try to keep them unrelated in the journal to focus on what is precisely going on with each illness.

Be as Specific as Possible

I look back at my medical journal and my memory is jogged: I had this episode of vertigo at this point in time, I took this medication, my neurologist said such-and-such, the vertigo tapered off at such-and-such time. I would never remember this on my own and I’m glad that I took such descriptive details. Referencing entries with specific dates, durations, performed tests, my feelings about the symptoms, what medications I took, whether said medications helped or did nothing, and my doctors’ opinions has helped me to keep a mental idea of my MS journey thus far. It’s still of course mysterious, but I feel a little more in control of what’s going on.

Regularly Update Your Status, Including the Good Times

Being well is a point of reference within the journal. It’s important to document this as part of the journey. Just checking in every few months keeps the journal updated and current.

Record Feelings about the Attacks and the Symptoms

I was able to see a pattern of anxiety and depression which I shared with my therapist because of my noted feelings within my medical journal. The psychological elements are definitely a part of the greater whole.

Remember to Bring the Medical Journal Along with You to Doctors’ Visits

This journal aids not only you but your treatment team in better knowing your disease history and present status. You can also immediately record what your doctors say, requesting proper spellings and exact information. Sometimes it all sounds like mumbo jumbo if you wait until you get home.

Stick to the Basics

I don’t know about you but I prefer to keep this sort of journal in a standard wide-ruled notebook. I don’t get fancy and I keep to the basics of my case. This isn’t my autobiography; it’s a book of facts I need to keep. A basic notebook works for me.

Having MS and Being Sick with a Bug

I’ve been flattened by some bug for the past 10 days and I have to say that having multiple sclerosis makes the ordeal that much worse. I’m not sure if I have a lingering cold or maybe something more serious, but I am just starting to re-emerge from the sickness that has been holding me down. And yes, it’s very frustrating.

I don’t know if non-MSers understand how infections are compounded by an autoimmune disease. Since we folks with MS are continuously being attacked by our own immune systems, when we get sick with a “real” foreign threat the risk of our MS symptoms worsening or our immune systems launching new autoimmune assaults (or MS relapses) increases. The immune system of someone with an autoimmune disease– MS, lupus, Crohn’s disease, ulcerative colitis, and so on— can go completely out of whack when the body is fighting a real threat such as an infection, trauma caused by an accident or surgery, or an emotionally-stressful situation. The body becomes very vulnerable to an attack from the immune system itself.

My other frustration lies with taking an immunosuppressive medication— one of the disease-modifying injectable meds— that has a tendency to make me feel worse when I am already sick with something. I take an interferon medication that lowers my resistance to infections and causes flu-like side-effects that are mild to moderate. On a normal day, the side-effects can be slightly annoying, causing headaches or mild fever/chills or maybe absolutely nothing, but when I’m sick with an infection the injections cause me to spike a fever, have bodily aches and pains, nausea, and often a blasting headache. UGH. I sometimes forgo a few shots during these sick times, although I have to admit that the injections have helped me to lead a somewhat symptom-free life during MS remissions. And my MS relapses have slowed down considerably since starting the drug a little over three years ago. So it’s a nonstop battle of weighing the pros and cons of my disease-modifying medication.

One thing I do find interesting about having MS is that it can sometimes work as a barometer to forecast oncoming illnesses. When my usually-dormant symptoms rear their ugly heads, I am often tipped off about a new infection. This has been the case with bladder infections, which I’ve come to experience since my MS diagnosis which was a little over three years ago. Bladder infections can be pretty vague at first– lethargy, a little nausea, and maybe some stomach upset. My MS symptoms become a great forecaster of oncoming bladder infections and other illnesses.

MS Cerebral (Brain) Attacks and Symptoms

The Brain: Google Images

Surprisingly, the least common area for a multiple sclerosis attack (only 3% of all relapses) is the cerebrum, or the vast area of the brain. Attacks to the cerebrum can cause demyelination to its nerves as well as brain atrophy, or shrinkage. Such relapses can cause the following symptoms in multiple sclerosis patients:

Cognitive Impairments

Although not as common as spinal cord or brain stem symptoms, cognitive disabilities are thought to affect about 50 to 60% of MSers over the courses of their diseases. Such impairments include short-term memory problems, a decrease in reasoning skills, vocabulary deficits (“fishing for words”), and problems with outside overstimulation and internally processing outside situations (confusion.) Only about 5 to 10% of those with multiple sclerosis develop severe cognitive problems.

Depression

Multiple sclerosis depression can be caused by several mitigating factors such as coping with a chronic and debilitating illness, taking medications that cause depression, and non-MS outside stressors (careers, financial situations, divorce, other illnesses, death, and so on.) MS depression can also be organic, or caused by the multiple sclerosis itself. Scientists now know that depression can arise from damage to nerves within the cerebrum. These nerves send and receive messages about emotions, and faulty nerves can misfire messages. Brain atrophy might also be responsible for organic depression.

Tonic Seizures

Although rare (occurring in approximately 5 out of every 800 MS patients), brief seizures can happen when there are lesions and inflammation in the cerebrum.

  • Reference:

Rosner, Louis J., MD and Shelley Ross. New Hope and Practical Advice for People with MS and Their Families. Simon & Schuster: New York, 2008.

MS Optic Nerve Attacks and Symptoms

Google Images

Optic neuritis, or the inflammation of the optic nerve that connects the eye to the brain, is the third most common type of multiple sclerosis relapse, making up approximately 17% of all attacks. 20% of all MSers experience this as their first acute attack. The optic nerve sends messages from the eye to the brain, describing visual clarity, color perception, and brightness. An attack of optic neuritis usually affects one eye. During an acute MS optic nerve attack (when the immune system attacks the myelin covering surrounding the optic nerve), the following symptoms may occur:

Blurred, murky vision: this can be intermittent or it can be a steady disruption of proper sight

Acute loss of vision: complete loss of vision in the affected eye may occur, and this too may fluctuate or remain steady during an attack

Eye pain: pain from the inflamed optic nerve can make moving the eye or even keeping the eye still very painful

Loss of or change in color vision: optic nerve inflammation can also cause a loss of or fluctuation in color clarity, making the visual field less vivid or “washed out”

MS Brain Stem and Cerebellar Attacks

Google Images

The second most common region for multiple sclerosis attacks is the brain stem-cerebellar area, making up approximately 38% of all relapses. There is a term called “Charcot’s Triad”, named after neurologist Jean-Martin Charcot, which describes the most prevalent symptoms resulting from these attacks: speech difficulties, compromised balance, and double vision. Brain stem-cerebellar attacks can cause any of the following symptoms in an MS patient:

Loss of Balance and Coordination

These problems can involve walking, rising to a standing position, using the legs, and/or using the arms and hands. MSers can have difficulties with walking and may sway to one side, or possibly experience vertigo or dizziness (along with nausea.) Loss of coordination, also referred to as ataxia, can affect the fine movements of the hands and make writing, combing one’s hair, and tying shoe laces very difficult. Another manifestation of this damage is an intention tremor, where the hand or hands shake. Patients also describe problems with clumsiness and the coordination of limbs.

Eye and Vision Abnormalities

There are two types of eye problems associated with brain stem and cerebellar attacks. The first is eye muscle jerking, or nystagmus, which causes vision to be “jumpy’” or moving. The second type is eye muscle weakness, or gaze palsy, which can cause double vision.

Speech and Swallowing Disturbances

Problems with speech, also known as dysarthria, can affect the rhythm or pronunciation of words. The slurring of words is one disorder, where a person might appear to be intoxicated. Rhythm can be affected too, and a patient may find herself “scanning” or speaking in a jerky or stuttering fashion. Problems with swallowing, or dysphagia, may also occur.

Trouble with Facial Muscles and Nerves

Weakness, muscle spasms, numbness, and pain may occur in facial muscles. A particular facial nerve that may be affected is the trigeminal nerve, which runs along both sides of the face. This can cause severe pain blasts or dull, achy pain along the cheeks and jawlines.

Tinnitus (Ear Pain and Ringing)

This is a less common problem. In severe cases, a loss of hearing may result. This is generally limited to one ear.

Emotional Disturbances

Inappropriate laughing, crying (emotional lability), and euphoria (exaggerated sense of wellbeing) can be noted with brain stem and cerebellar attacks. These symptoms are considered separate from multiple sclerosis depression, which appears to originate from damage to the cerebrum.

Reference:

Rosner, Louis J., MD and Shelley Ross. Multiple Sclerosis: New Hope and Practical Advice for People with MS and their Families. Simon & Schuster: New York, NY, 2008.

MS Spinal Cord Attacks and Symptoms

The Spinal Cord, Google Images

Doctors have identified specific areas of multiple sclerosis damage that correlate with specific MS symptoms and impairments. Depending on the location of a lesion (MS nerve demyelination), the resulting damage will affect sensory perceptions, motor skills, vision, balance, swallowing, and so on.

Spinal cord attacks— those that occur anywhere on the spinal cord from the cervical region (the neck) down to the thoracic region (mid-back)— are the most common form of MS relapses (approximately 42%) and can result in the following impairments:

Sensory Functions

paresthesia: unpleasant sensations in the limbs and torso such as pins-and-needles or tingling, buzzing, hot and cold sensations, wetness, banding or tightening around the mid or upper torso (the “MS hug”), or vibrating sensations

Lhermitte’s sign: a very common sensation of tingling or electrical impulses that radiate from the neck down into the arms and legs when the head is bent forward

numbness: this can be mild, with a slight impairment of feeling, or more pronounced, with the inability to sense one’s limbs or trunk, causing problems with sitting and movements (clumsiness)

Motor Functions

spasticity: muscle spasms that cause rigidity and involuntary jerking in the limbs and trunk. The legs are the most common area for this to happen. Spasticity can increase at night or with fatigue, and a common complaint is “restless leg syndrome”, where leg muscles will alternate between jerking and cramping. Muscle stiffness is another problem.

weakness: heaviness and/or tiredness in the limbs. Often noted at “walking through cement” or “having lead limbs.” This can cause problems with walking, standing, and dexterity (including problems with writing and properly using the hands.) Sometimes rest can help limb weakness.

Bodily Functions

bladder and bowel problems: these can include emptying and/or holding the bladder or bowel. The muscles that control these are compromised and problems with bladder infections and constipation can result. Also, urgency can be increased and holding becomes an issue.

sexual dysfunctions: men and women can have numbness and tingling in the genital regions, and problems with erections and arousal

Reference :

  • Rosner, Louis J, MD, and Shelley Ross. Multiple Sclerosis: New Hope and Practical Advice for People with MS and their Families. Simon & Schuster: New York, NY, 2008.