Believe me, I understand what that moment is like: When you hear that you have multiple sclerosis. I was a health professional and I was married to a health professional when I heard the news. Still, it was an overpowering shock to the system. It is a moment you will never forget, like one of those moments in history that stick in your memory. “Where were you when……?” Trust me, you will never forget it.
I was well educated in many aspects of health and medicine, as was my husband (an emergency department physician), we found ourselves lacking in more detailed knowledge about this disease. My own grandmother died from MS, but we didn’t see MS patients very often in the ER. We only had basic knowledge of the disease, current treatments available, prognosis, etc.
I want to offer a basic overview of MS for the newly diagnosed. This is the information I feel will be most helpful to new patients in those first weeks after diagnosis, which can be overwhelming to say the least.
What is multiple sclerosis?
In multiple sclerosis (MS), damage to the myelin coating around the nerve fibers in the central nervous system (CNS) and to the nerve fibers themselves interferes with the transmission of nerve signals between the brain, spinal cord and the rest of the body. Disrupted nerve signals cause the symptoms of MS, which vary from one person to another and over time for any given individual, depending on where the damage occurs (National MS Society, 2014.)
Think of your nerves like electrical cords. The brain and spinal cord are responsible for sending electrical messages through these nerves to all areas of your body. Each nerve is coated with a fatty layer called myelin. This is the equivalent of the plastic coating over an electrical wire. MS occurs when the immune system, specifically your white blood cells, mistake this coating as a foreign object, a danger to you. In response, an attack begins. Your white blood cells begin to damage and destroy the myelin coating. This results in the equivalent of a “short in the wire.” Like a damaged wire, the signals your brain sends through these damaged nerves become distorted and inappropriate. These “mixed signals” result in the wide variety of symptoms one experiences with MS. Numbness, pain, weakness, dizziness, loss of balance, and loss of vision are some of the most common. The lesions that form in the brain and spinal cord are visible as bright white areas on an MRI.
|MS causes damage and scarring of the coating surrounding the nerve (myelin)|
How is MS diagnosed?
In order to make a diagnosis of MS, the physician must:
• Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
• Find evidence that the damage occurred at least one month apart AND
• Rule out all other possible diagnoses
In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using MRI, visual evoked potentials (VEP) and cerebrospinal fluid analysis to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as a clinically-isolated syndrome (CIS). A person with CIS may or may not go on to develop MS (National MS Society, 2014.)
So, as you can see…..diagnosis is not made based solely on one episode of symptoms. Sometimes a patient may have only one attack, and never have another symptom or lesion. This is called clinically isolated syndrome (CIS). Speeding the diagnosis of MS is very important, because in the past patients went years without treatment or diagnosis. Improvements in the speed of diagnosis help patients start disease-modifying therapies faster.
How is MS treated?
Ten disease-modifying medications have been approved by the U.S. Food and Drug Administration (FDA) to treat relapsing forms of MS. These medications reduce the frequency and severity of relapses (also called attacks or exacerbations), reduce the accumulation of lesions in the brain and spinal cord as seen on magnetic resonance imaging (MRI) and may slow the accumulation of disability for many people with MS. No medications have yet been approved to treat primary-progressive MS (National MS Society, 2014.)
The importance of starting a disease modifying medication upon diagnosis cannot be overstated. These drugs are our most important weapons in combatting this disease. The following is a list of the 10 currently approved medications:
• Aubagio (teriflunomide)
• Avonex (interferon beta-1a)
• Betaseron (interferon beta-1b)
• Copaxone (glatiramer acetate)
• Extavia (interferon beta-1b)
• Gilenya (fingolimod)
• Novantrone (mitoxantrone)
• Plegridy (peginterferon beta-1a)
• Rebif (interferon beta-1a)
• Tecfidera (dimethyl fumarate)
• Tysabri (natalizumab)
What constitutes a relapse?
An exacerbation of MS is caused by inflammation in the central nervous system (CNS) that causes damage to the myelin and slows or blocks the transmission of nerve impulses. To be a true exacerbation, the attack must last at least 24 hours and be separated from a previous exacerbation by at least 30 days. However, most exacerbations last from a few days to several weeks or even months. Exacerbations can be mild or severe enough to interfere with a person’s ability to function at home and at work. Severe exacerbations are most commonly treated with high-dose corticosteroids to reduce the inflammation (National MS Society, 2014.)
In my experience, it can be very hard to determine if you are having a relapse. I have new symptoms almost every week. The time related guideline helps. Don’t panic if you feel a new symptom, because many will resolve within the same day, or change hour to hour. The key is to watch for new symptoms that do not resolve after 24 hours. Relapses are treated with the following drugs:
• High-dose intravenous Solu-Medrol® (methylprednisolone)
• High-dose oral Deltasone® (prednisone)
• H.P. Acthar Gel (ACTH) is an option for those who are unable to cope with the side effects of high-dose corticosteroids, have been treated unsuccessfully with corticosteroids, do not have access to intravenous therapy, or have trouble receiving medication intravenously because of difficulty accessing the veins.
There are many options for complementary treatments, including exercise programs, acupuncture, massage therapy, and various dietary programs. The important thing to remember is to always check with your provider before trying these therapies. Be wary of people offering “proven” alternative therapies that your provider does not agree with. Research needs to be conducted on a wide scale before a treatment can be considered effective. In addition, supplements and vitamin therapies are not regulated and tested the way prescription drugs are. There are no proven supplements for treating or curing MS. Unfortunately, there are people looking to take advantage of MS patients and their desperation for a cure, and you should always beware of untested treatments.
Who can I trust as a resource for information?
Your provider is always #1. Find a provider who you feel connected to. Your Neurologist will now become your primary care provider. You will need to have easy access to advice through phone conversations, in-person appointments, or email. In addition, there are several trusted online sources of information that I would recommend:
The National MS Society: http://www.nationalmssociety.org/
Race to Erase MS/Nancy Davis Foundation:
The Mayo Clinic
What do I do now?
Try to learn as much as you can about MS. Connect with a provider, and then connect with as many support resources as possible. Research is continuous, and we now have many therapy options compared with a few decades ago. Most importantly, remember that life doesn’t end with this diagnosis. It is terrifying at first, but eventually you begin to feel empowered through knowledge and support. You will begin to understand your own version of MS (every single patient is different), and learn to listen to your body. Hang in there! You certainly aren’t alone!
© Meagan Freeman, 2014. Motherhoodandmultiplesclerosis.com