Resources
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Information
The more informed you are, the better decision making you can make. We recommend the following websites for the most updated and accurate information.
What is MS?
Learning all you can about MS will help you partner with your healthcare team to evaluate your treatment options, manage your symptoms, and enhance your overall health and quality of life. Here are some resources:
Glossary of Terms
Bowel & Bladder
People with MS may find that bladder and bowel symptoms keep them from doing the things they want to. It doesn’t need to be this way. These common MS symptoms can be managed and treated. Learn about the latest advances and recommendations here:
Cohort
A cohort is a group of people who share something in common. The BioScreen cohort is a group of 500 people with MS who are part of the EPIC study. MS experts at UCSF have followed them closely for over 10 years. Their MS treatment sometimes includes strong medicines, and they have done very well over time. Keep in mind that medicine choices, care decisions and treatment styles can differ based on where you get care.
Coordination
Coordination refers to how smoothly the arms and legs move. It can also refer to how well one keeps balance. When there are problems with movement, like clumsiness or tremors, treatment with physical therapy may help.
EDSS
EDSS stands for the Expanded Disability Status Scale. The EDSS is used to measure a person’s MS disability level over time. The scale runs from 0 – 10 and goes up in half point steps. An EDSS comes from a clinical exam. It covers 7 areas of the body, known as functional systems. The higher the score on the EDSS scale, the higher the level of disability. A patient can answer questions about these functional systems, providing a patient reported EDSS.
Click here, for more information.Face & Neck
MS can affect the face and neck. Numbness of the face is a common symptom. Other problems in the face and neck area can include drooping of one eyelid or side of the face, and having a hard time talking, swallowing, and hearing. If you are dealing with these issues, the information and resources here can help:
Mobility & Balance
Mobility means many things to people living with MS. It can mean getting around a grocery store, shopping or driving a car. It can also refer to accessibility issues. Exercise, medicines, rehab therapy and devices can help with walking and balance. These resources can help with efforts to stay mobile with MS:
Mood & Thinking
MS can affect a person’s thinking (cognition) and mood (how they feel) in a number of ways. Thinking and mood also play a major role in shaping a person’s experience with MS. Here are some resources on why and how people with MS have changes in mood and thinking. They include the latest advice on how these symptoms can be addressed. Learn how physical activity, medicines, counseling and self-management strategies can help:
MS Medications
There are different types of MS medicines to help people manage their MS, improve comfort and quality of life. Disease-modifying therapies (DMTs) are medicines that can change the course of MS. They work by keeping new MS lesions (spots seen on MRI) from forming. Lesions cause MS symptoms and relapses. Symptomatic therapies are medicines that treat symptoms but do not affect lesions. Relapses are often treated with steroids. The “My Measures” section of this site allows you to track your DMTs. Click here, to read more.
Pain
It can range from mild to severe, and be short-lived or long-lasting (chronic). Pain from a lesion in the spinal cord is known as the “MS hug.” Pain can also come from nerve injury, and problems with the muscles and joints. Visit these resources for more about coping with MS and pain:
Relapse
Relapse refers to a new or worsening MS symptom caused by a new or enlarging MS plaque (spots seen on MRI). Click here, for more information.
Sensation
Sensation refers to physical feeling. Many people with MS have changes in sensation. These can include: numbness, tingling or just a ‘funny’ feeling. Symptoms can range from mild to severe. Click here, for more information.
Sexual Function
Problems with sexual function are common and not limited to MS. They can be caused by lots of things that impact the brain, like mood, fatigue and relationship problems. After feelings of arousal start in the brain, the brain sends signals to the sexual organs. The signals travel along nerves in the spinal cord. If these nerve pathways are damaged by MS, it can affect the body’s response, like arousal and orgasm. MS can also lead to pain or numbness in the pelvic region. Learn more about how to understand and improve sexual function here:
Sleep & Fatigue
Strength
People with MS can have loss of strength in arm, torso and leg muscles. This can happen as a result of damage to the protective cover around nerves (myelin sheath). Muscle weakness can also come from not moving as much. Fatigue, sadness, contracted and stiff muscles (spasticity) and loss of strength in other body parts can make it harder to get moving. Staying active, with the help of rehabilitation specialists like physical and occupational therapy, is a key part of MS care.
Vision
Up to 8 out of 10 people with MS might experience difficulties with their vision at some point in their MS course. This can be the first symptom of MS for many. Changes in the eyes can include “optic neuritis”, or inflammation of the optic nerve, which leads blurry vision or changes in how color is seen. People can also experience double vision or uncontrolled eye movements if there is injury to the nerves that control eye movement. These resources may be helpful when coping with vision changes:
Wellness
Wellness can be measured many ways: physical, mental, social, and spiritual among others. Feelings about wellness are highly personal and can change over time. It is a lifelong journey with growth and choices along the way. These resources can help you on your path to wellness:
