Planning for Your Future after an MS Diagnosis
The most important thing is to educate yourself about multiple sclerosis, so you can make informed choices about your care.
A diagnosis of a major disease or illness such as MS can be devastating and will change your life. The more you can prepare yourself mentally for the diagnosis, and focus on planning the future afterwards, the better off you’ll be.
What is Multiple Sclerosis?
Multiple sclerosis, known as MS, is a disease that affects central nervous system. The body’s immune system causes inflammation that damages the fatty substance insulating the brain and spinal cord nerve fibers, which causes multiple areas of scar tissue that gives the disease its name. “Sclerosis” is a medical term for the abnormal hardening of body tissue.
Most people are diagnosed between 20 and 50 years old, with two to three times more women diagnosed than men. The cause of MS is still unknown, although the dominant theory is that it’s caused by unknown environmental factors that trigger a response in certain people. It was first described by a doctor named Jean-Martin Charcot in 1868.
The symptoms of multiple sclerosis vary widely, which often makes the disease complicated to diagnose. Dozens of different neurological symptoms are common, including loss of sensation, blurred vision, and other vision problems along with muscle spasms, exhaustion, incontinence, and difficulties with coordination and balance. These symptoms are dependant on where the lesions in the nervous system are located.
In addition to these physical symptoms, mental health issues like depression and mood instability are both common, as well as difficulties putting thoughts together. Often, elevated outside temperatures will cause symptoms to worsen — this is called Uhthoff’s phenomenon.
Learn about Multiple Sclerosis
Once you receive a diagnosis of MS, it’s important to learn all there is to know about the disease, including any possible treatments and therapies that may be available to you. Currently, there is no known cure for the disease, although there are therapies that prevent new attacks and help lessen the impact of any past attacks or relapses. Most doctors will want you to start on medication right away.
There are four different types of MS. Clinically isolated syndrome (CIS) is the first occurrence of symptoms that usually heralds the development of MS. As of 2017, it is possible to treat someone with CIS and potentially delay the onset of MS. The second type is relapsing remitting MS (RRMS), which is characterized by attacks followed by a period of remission where symptoms can go away, leaving the person looking and feeling completely healthy. RRMS typically develops into later-stage MS over time. Secondary progressive MS (SPMS) is generally what follows a relapsing remitting course of MS, and it means that a patient’s symptoms are generally getting worse, with disability increasing as time goes on. The final and most intense type of MS is primary progressive MS (PPMS), which sees the patient’s neurological function declining gradually without remissions.
Talk to Your Family
If you’re diagnosed with MS, the most important thing to do after coming to terms with your diagnosis is to tell your family and loved ones. Some people think it’s important to first get a firm diagnosis and potentially a second opinion before letting loved ones in, while others keep their family informed as the process is ongoing. There’s no right answer since it depends on your level of comfort.
While it’s important to maintain as much privacy as you feel you need, telling people in your life allows them to support you, and gives you an outlet to discuss the feelings that come up when you think about your health. Some psychologists suggest starting with your immediate family, then working outwards.
While you figure out who to talk to about your MS, make sure that anyone that you’ve already told is aware of your preferences regarding communication. Some people choose to have others spread the news, while others prefer to tell everyone personally.
Figure Out Finances
The National MS Society estimates that the cost of living with MS every year is roughly $70,000. That money generally gets spent on treatments and medications, as well as home and auto modifications as disability caused by the disease progresses. Living with MS can also require a level of at-home care that family members are not equipped to provide, so nursing assistance may be needed.
Your healthcare facility can help you sort out the healthcare costs, and certain MS organizations offer scholarships to students with MS, and bursaries to help cover health-related expenses to those in need. It’s important to research all your options, so you know what assistance is out there for you.
Find a Support Group
Getting a life-changing diagnosis can make many people feel isolated, angry, and misunderstood. Luckily, there are tons of support groups out there for people with MS. The National MS Society has a listing of local MS support groups nationwide, and they’ll also match you with a peer connection, someone who has been there before and can provide informed, compassionate support.
If you’re struggling to cope with your diagnosis, all of these resources can help. It’s also never a bad idea to consult a therapist, who can help you process your feelings and work with you to find useful coping strategies.
Talk to Your Work
While it’s true that some of the symptoms associated with MS can get in the way of some occupations, the disease affects people so differently that it’s best to wait and see for yourself what you feel you can handle. At your work, you may have to be your own advocate, and ask for reasonable accommodations so that you can continue to be a productive member of the team. You should never be penalized for asking for accommodations for a disability, but jujust in case there’s an issue, you should familiarize yourself with the American’s with Disabilities Act (ADA).