Multiple sclerosis (MS) is an inflammatory autoimmune disease with a wide range of symptoms that can mimic other conditions. In MS, the immune system attacks the protective coating of the nerve fibers (a substance known as myelin), causing permanent scarring, or sclerosis. Because damage may occur in different places in the central nervous system — including the brain, spinal cord, and optic nerves — there is no one simple diagnostic test or telltale symptom that can be considered a definitive sign of MS.

When someone experiences their first symptom of multiple sclerosis, it may be frightening. Early symptoms of MS may be mild, but if you are in tune with your body, you may understand that something is “off.” You may be tired, get headaches, notice balance problems, or have bladder or bowel changes. It can be scary and make you feel isolated, if you’re confused about what is happening.

In an article in Momentum, the magazine of the National Multiple Sclerosis Society, Ann Borsellino reminisced, “Many times early on in my disease, I wished I had something people could see, because then they would know what I was going through.”

One study estimates that nearly 1 million Americans are living with MS. Many who have the disease can look back and identify one or two early signs of something that was amiss. Usually it was vision changes or general muscle weakness or numbness that led them to seek a diagnosis.

Vision Changes

Approximately 1 in 4 people who have multiple sclerosis first noticed a problem with their eyesight, according to the National Health Service in the U.K. A condition known as optic neuritis, caused by inflammation of the optic nerve, is common in MS. Vision problems can include:

• Blurriness (usually in one eye)
• Pain when you make eye movements
• Double vision
• Colorblindness or loss of color vision
• Flashing lights
• Loss of your field of vision

If you experience one of these visual problems, ask yourself these questions. You may want to discuss your answers with a doctor.

• Does my vision look blurred in one eye?
• Does it hurt to change visual direction?
• Has the problem lasted more than one or two days?

Muscle Weakness or Numbness

Muscle weakness or numbness is another common warning sign of MS. The Multiple Sclerosis Foundation estimates that up to 55 percent of people with MS identify numbness or tingling as some of the earliest signs of the disease. While weakness or numbness can be attributable to excessive physical exertion or injury, those with multiple sclerosis experience these sensations over multiple days.

In addition to feeling tired or experiencing muscle weakness, you may notice some of these sensations in your arms, legs, hands, or feet:

• Pins and needles
• Burning
• Sensitivity to touch

While visual disturbances and weakness or numbness may be the most common early indicators of multiple sclerosis, there are a wide range of MS symptoms that can be felt from head to toe, from migraines to toe tingling. Symptoms vary from person to person, and only a physician can make an accurate diagnosis.

What MyMSTeam Members Are Saying

Many members of MyMSTeam have reported that visual disturbances and numbness or weakness were early indicators of MS in their lives. One member wrote, “I had weakness on my right side. An on-call general practitioner sent me to the emergency room in a taxi. Staff were waiting for me and treated me for a possible stroke. I spent 10 days in the hospital before I was diagnosed using an MRI scan.” Another member shared, “I went to pick up a coffee cup and it slipped right out of my hands and shattered on the floor.”

However, MyMSTeam members have also shared a wide range of other symptoms, including muscle spasms and mobility issues. These early symptoms led members to seek medical help that eventually led to their diagnoses.

• “The tops of my feet hurt.”
• “I had difficulty lifting my left foot up, so I was tripping and scuffing everywhere.”
• “I had just returned from overseas. I started losing my balance a lot. I thought it was jet lag.”
• “I had terrible electric shocks down my spine when looking down.”

Next Steps If You Notice Symptoms

Listen to your body. If you’re concerned that something doesn’t feel quite right, call your physician. Whether you’re experiencing a visual disturbance, muscle numbness or weakness, headaches or vertigo, bladder or bowel problems, it is important to communicate your concerns immediately.

Advocate for yourself and be as specific as possible about your symptoms to ensure your doctor can make an accurate and timely diagnosis. You may be experiencing something unrelated to MS, or it may be a fleeting, temporary symptom. However, if a qualified neurologist gives you the diagnosis of multiple sclerosis, you can learn to manage your symptoms with appropriate therapies and healthy living strategies.

Have you been diagnosed with MS? What were your earliest symptoms? Comment below or start a conversation on MyMSTeam. You never know who could benefit from hearing about your experience.

References

1. Invisible Symptoms in MS — Momentum
2. Landmark Study Estimates Nearly 1 Million in the U.S. Have Multiple Sclerosis — National Multiple Sclerosis Society
3. Symptoms of Multiple Sclerosis — NHS UK
4. Symptoms of MS — Multiple Sclerosis Foundation

Mary is a graduate of Providence College (Rhode Island) and the Medill School of Journalism at Northwestern University (Illinois). Learn more about her here.