Gratitude for MS Friends Worldwide

I remember when several of us MS bloggers had a chance to meet in person for the first time. Meeting face to face and getting to know one another was a transformative experience; since that initial gathering we’ve become longtime friends, continuing to meet whenever we can and frequently communicating and supporting each other online.

During the past seven years, I have been fortunate to travel throughout the country to advocate for MS patients. I’ve participated on panels and spoken at conferences. I’ve even traveled to Switzerland twice to represent the interests of MS patients.

Now, I am more than a musician. I am a patient advocate, writer, speaker, consultant, educator, and champion. I also am just trying to live the best life I can with these unpredictable diseases.

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Why I Am ThankFul For My MS Friends Around The World

MS Symptoms and MRI Lesions Don't Always Match

One of the most mysterious things about multiple sclerosis (MS) is the wide variety of symptoms and lack of uniformity in disability progression. Although some symptoms can be traced to lesions in specific areas of the central nervous system, including the brain, spine, and optic nerves, there is often a disconnect between relapses, lesions, and disability. Little about MS follows predictable patterns.

In the MS community, I’ve heard lots of questions regarding this apparent disconnect. People with MS are sincerely trying to make sense of the disease and find an explanation for their unpredictable experiences. Here are some common questions and potential explanations.

“I had a relapse, but my annual MRI didn’t show any active lesions. Why not?”

Magnetic resonance imaging (MRI) is helpful in the diagnosis of MS because it can detect inflammation and demyelination that primarily affects white matter in the brain or spinal cord. Active inflammation and new demyelination show up in MRI as gadolinium-enhancing lesions. As inflammation resolves and the body works to repair itself, lesions will no longer enhance. Researchers have indicated that it could take monthly MRI scans to catch these lesions as they come and go.

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Why Don’t My Lesions Match My MS Symptoms?

How To Have An Easier MRI Experience

MRI scanners use strong magnetic fields to generate images. The standard imaging protocol in MS suggests use of a minimum 3 Tesla (3T) "closed machine" for best results. The imaging sequences focus on the white matter and grey matter of the brain and/or spinal cord before and after venous administration of a contrast agent, gadolinium, to enhance certain anatomical features.

Here are some things you need to know to make your MRI experience less stressful and more successful.

Before the MRI

Dress comfortably. Because the MRI scanner is basically a large magnet, you must not wear clothing with lots of metal rivets, buttons, or zippers. To avoid the need to disrobe and put on a hospital gown, I prefer to go to my MRI appointment wearing sweatpants and a comfortable T-shirt. That way, the only clothing I have to remember to take off in the dressing room is my underwire bra. Don’t worry, the technician will double-check that you aren’t wearing anything that would interfere with the MRI.

Remove body jewelry, watch, and wallet. Consider leaving your jewelry at home for safe keeping. You will be asked about metal in the body — such as a pacemaker, cochlear implants, joint replacements, or metal fragments — because in certain circumstances, an MRI can cause damage to the equipment itself or to body tissue when metal is involved. Some metals, such as titanium clips from a breast biopsy, do not pose a problem.


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What It’s Like to Have an MRI Test for MS

What is NEDA?

Since the first disease-modifying therapy (DMT) for multiple sclerosis (MS) was approved by the FDA in 1993, medications for MS have been developed to slow down the disease. Many have been shown in clinical studies to reduce the frequency of relapse and slow the accumulation of permanent disability.

As early as 2010, MS researchers began to suggest that rather than simply slowing down the disease, a clinical goal of therapy could be “freedom from disease activity.” The idea is that measuring the number of people with MS who can achieve freedom from disease activity could become a better gauge to determine therapeutic effectiveness. The concept is now referred to as “no evidence of disease activity,” or NEDA, for short.

What is NEDA?

While the definition of NEDA is evolving, “no evidence of disease activity” means exactly what is sounds like. A person with MS would show no signs of active disease — but this doesn’t mean that old symptoms or disability would disappear. For NEDA to occur, three conditions need to be met, the combination of which is sometimes called NEDA3.

• No clinical relapses or exacerbations
• No Gd-enhancing (active) lesions and/or no new or newly-enlarging T2 lesions
• No change in the neurological exam or confirmed disability progression

Note that these measures are focused primarily on inflammatory disease activity and do not readily capture other disease consequences, such as neurodegeneration. Researchers have suggested the addition of a fourth measure — brain volume loss— to provide a more comprehensive view of disease activity and progression. This new criteria is called NEDA4.

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'No Evidence of Disease Activity' in MS: What is NEDA, Anyway?

Does Smoking Increase MS Risk?

Does smoking play a role in multiple sclerosis (MS)? Several studies have investigated possible connections between tobacco smoke and MS. A 2015 brochure written by Tiffani Stroup and published by the National MS Society (NMSS), presents a summary of information gathered from many of these research studies. Here’s an excerpt:

“Together, these findings demonstrate the many negative effects of cigarette smoking in people with MS. Not only are smokers at higher risk of developing multiple sclerosis, but they are also more likely to: 1) be diagnosed with the progressive form of the disease; 2) have higher disability scores, increased disease activity on MRI and more significant symptoms; 3) develop antibodies that make some of the multiple sclerosis medicines ineffective; and 4) transition to the secondary progressive form of the disease faster than ex-smokers or never smokers.

The brochure continues: “Passive (second-hand) smoke exposure has also been associated with an increased risk of developing multiple sclerosis in adults and children. The good news is that stopping smoking can help to reduce these negative effects.”

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Is There Really a Connection Between Smoking and MS?