Like any diagnosis, finding out that you, or the person you’re caring for, has multiple sclerosis (MS) can be scary.
Someone with MS may experience problems with their balance, muscle control, vision, and other physical issues.
As a caregiver, there are so many things you’ll want to research and many other worries that you’ll have questions about. In addition to speaking with doctors and health care providers, talking to others who have been diagnosed with MS or who provide care to someone with MS can be very reassuring.
Talking to others, asking your health care providers MS questions, and researching online MS resources are all ways to better prepare yourself for what you and the person in your care can expect. See also, our Elizz article on Getting Health and Medical Information Organized.
It can be helpful to take notes as you research multiple sclerosis online or speak to other caregivers, and write down any questions as you think of them. This list of questions will help you make the most of your time with doctors and health care providers, as their answers will be specific to your own situation.
Multiple sclerosis facts
To get you started, here are eight quick MS facts that caregivers need to know:
- What Is Multiple Sclerosis - MS stands for Multiple Sclerosis. Once diagnosed, it’s a life-long neurological disease that can affect your spinal cord, brain, and optic nerves. MS is the breakdown of a substance that wraps around nerves called myelin. As myelin is damaged, scar tissue or lesions appear. Someone with MS may experience problems with their balance, muscle control, vision, and other physical issues. MS symptoms can vary from one person to the next. One person may experience very minor MS symptoms, while someone else’s symptoms could be severe and prohibit them from walking without assistance, or from doing every day activities with ease.
- What Causes Multiple Sclerosis - Doctors still aren’t sure what exactly causes MS. There are several factors that seem to increase the likelihood of developing MS. For example, it’s believed that there is a genetic factor that can increase risk of multiple sclerosis. Lifestyle habits such as smoking may also increase an individual’s risk. It could even be a severe vitamin D deficiency. Then there are examples of people who get MS after having a viral infection (Epstein-Barr, human herpes virus 6 are examples). It’s important to note that although scientists are looking at genetics, and possible links with viruses, the exact cause of MS is still unclear.
- How Is MS Diagnosed - MS is diagnosed by a series of tests, starting with a complete medical history and neurological exam. The difficulty in diagnosing MS is that often the symptoms are similar to other illnesses, or they are intermittent, making an MS diagnosis hard to pinpoint. Once MS is suspected, and other causes are ruled out, further testing such as an MRI, evoked potentials, and possibly even a spinal tap procedure (lumbar puncture) can be conducted for confirmation.
- Multiple Sclerosis Prognosis - The prognosis for someone diagnosed with MS is fairly good. MS is unlikely to be fatal nor will it considerably shorten your lifespan. Quality of life could be diminished if the person suffers more severe symptoms of MS.
- MS Treatment - MS typically requires ongoing treatment in order to manage symptoms. Unfortunately, at this time there is still no cure. MS treatment is focused on slowing the progression of the disease, speeding up recovery after an attack, and managing MS symptoms. For more information on treatments and therapies used for MS click here.
- Managing Multiple Sclerosis - Healthy lifestyle changes can help you better manage your MS symptoms. Really, these tips apply to everyone looking for a healthy and balanced lifestyle. Get a good amount of rest, eat nutritious meals, exercise your body and your mind, ensure you’re getting enough vitamin D, quit or limit unhealthy habits such as smoking or drinking, and find ways to reduce stress. One interesting MS-specific tip is to stay cool as much as possible. Heat intolerance and overheating happen quite easily for someone with MS. Being too hot can aggravate MS symptoms, so look for ways to stay cool, such as being in an air conditioned environment, staying hydrated with cool fluids, wearing lightweight clothing, and applying icy compresses if needed.
- Multiple Sclerosis Care Plan - The level of care that needs to be provided to someone with MS is heavily determined by the severity of their symptoms. This can change over time, and you may see periods of decline and periods of improvement. Managing MS symptoms is usually the first thing doctors will try to get under control after a diagnosis has been made. As the caregiver, you should be aware of any pain or discomfort, issues with bladder function, and mobility concerns. These are all areas that the person with MS may need you to support them in.
- MS Relapse and Remission – Having MS can be unpredictable since relapse and remission are common for people being treated for MS. When someone is experiencing a relapse it means that they are experiencing an increase or “flare-up” of their symptoms. During remission, they are not experiencing symptoms, but will usually continue to treat their MS. A person with MS may experience multiple phases of relapse and remission of varying lengths of time.
Support and more information can be located on the website of the Multiple Sclerosis Society of Canada or check out our Elizz Caregiver Services page.