Multiple Sclerosis Resources: Information and Support Groups
Multiple sclerosis (MS) is a chronic and unpredictable disease that affects the central nervous system. Inflammation and an immune-mediated process cause damage to the myelin which protects the nerves of the spinal cord and the brain. This damage produces lesions that can lead to a variety of symptoms.
Symptoms of MS range from mild to severely debilitating. Symptoms include fatigue, pain, blurred vision, numbness, spasticity, difficulty walking, cognitive impairment, etc.
For most people with MS, the disease follows a cyclic course, which means that people with the disease experience periods when the disease goes into remission, symptoms lessen or disappear, and periods when the disease relapses, resulting in worsening of new or existing symptoms. .
Although there is no cure, there are medications available to slow the progression of the disease and treat the symptoms.
MS is a lifelong disease that can be difficult to deal with on your own. In this article, you will learn about various resources that can provide support, information, and financial assistance.
A diagnosis of MS can be overwhelming. You may have many questions and concerns. Although your healthcare provider will give you information about the condition, you may need more answers and support.
Various groups provide information about living with MS and other resources. These include:
Healthcare providers and treatment facilities
Multiple sclerosis is usually treated by a specialist in multiple sclerosis or a neurologist who specializes in the disease. To find a health care provider or treatment center in your area, you can consult one of the resources listed here.
Living with a chronic illness can have financial consequences. Many groups offer programs to help:
- The MS Foundation offers a variety of grants and programs to help cover the costs of treatment, home care, and living expenses like rent.
- The MS Society offers a Find Resources and Physicians tool with a “Financial Aid” category and direct financial support.
- Good Days is a nonprofit organization that provides financial resources for treatment.
- The pharmaceutical companies behind MS drugs like Aubagio and Rebif often offer financial programs to help cover copayments (a fixed amount paid per prescription) for their drugs. Visit the website of the drug you were prescribed to find out if it offers a copayment program.
Online support groups
Connecting with other people with MS can help you deal with the challenges of living with the disease and make you feel less alone. Online support groups can be great resources for information, comfort, education and inspiration:
- MSWorld provides a forum for people with MS to ask questions, share their stories, and learn more about symptoms and treatments.
- Patients Like Me provides a space to connect with peers also living with MS.
- The MS Foundation has a Facebook group where people can share their experiences and ask questions in a supportive environment.
- MyMSTeam is a social network to connect with other people with MS. Here you can find emotional support and information about living with the disease.
- Multiplesclerosis.net hosts an online community where people with MS can connect with others and find more information about the disease.
Patient blogs are written by people with MS. Many provide information and a candid look at what it’s like to live with the disease:
- My normal news: Nicole Lemelle writes about her diagnosis, advocacy and life with MS.
- Tripping in the air: Ardra Shephard talks openly and humorously about her life with MS. She also shares relevant information about symptoms, treatment options, and more.
- Momentum magazine: The Multiple Sclerosis Society has a blog and magazine that provides information about living with the disease and highlights different people with multiple sclerosis.
- Girl with MS: Caroline Craven has lived with MS for over 20 years. She shares snippets of her journey and tips for living well with the disease.
MS research is ongoing. Clinical trials look at potential treatments, while other research looks for the cause of disease and possible cures:
- The National MS Society provides a research tool for people wishing to participate in clinical trials.
- Race to Erase MS, through its Center Without Walls program, funds and supports research into the causes and treatments of MS.
- The National Institutes of Health and the National Institute of Neurological Disorders and Stroke are major funders of research into neurological disorders, including MS.
People with MS can find resources from various foundations, societies, personal blogs, and online support groups. Financial resources also exist to help people live with the disease. Clinical research is ongoing on treatments and a cure.
A word from Verywell
Multiple sclerosis can often be an invisible disease, making it difficult for others to fully understand the difficulties of living with the disease. Seeking support and companionship from MS groups, social media, and blogs about the disease can help you feel less alone.
Non-profit organizations can help you find the resources you need to live with the disease. They can help you with everything from finding a specialist and treatment center to accessing financial support from a local in-person support group, as well as information on different treatment options and how to what to expect with the disease.
Frequently Asked Questions
How does the MS Society help?
The MS Society can help you navigate all aspects of living with the disease, from finding a health care provider to offering financial support to offering support groups. support and educational events.
How common is multiple sclerosis?
MS affects about 400,000 people in the United States and about 2.5 million worldwide.
Can I apply for disability benefit for MS?
Some people unable to work due to MS may be able to apply for disability and receive benefits.
How can I help someone with MS?
Although MS is an unpredictable disease that affects everyone differently, it does not change who a person is. Continue to treat the person with MS as you always have.
Ask them how they are doing, learn more about the condition, so you understand what they are going through, offer to help them with daily chores, and understand if their symptoms prevent them from doing activities you enjoyed doing together.