Looking Back at Multiple Sclerosis Treatment Choices
People living with multiple sclerosis (MS) are faced with countless decisions about how they want to treat their condition. These decisions can have far-reaching consequences on all areas of life, including financial stability and quality of life. Treatment decisions are deeply personal, and there is no one-size-fits-all approach to how people can best manage and treat their MS.
In our 2020 Multiple Sclerosis In America survey, we asked people living with MS to share what they wish they had done differently to manage or treat their condition. More than 2,800 people who completed the survey offered a unique look at their treatment choices, regrets, and advice for others.
Looking back, what would people living with MS have done differently?
Most survey respondents wish they would have made different decisions to better manage and treat their MS. They wish they would have:
- Been diagnosed earlier or sought out diagnosis for symptoms sooner
- Started treatment with a DMT (disease-modifying therapy) earlier
- Lived a healthier lifestyle, including more exercise, a better diet, and physical therapy
- Visited a neurologist or saw a better or different neurologist sooner
- Advocated for themselves more
- Used a different treatment (or switched earlier)
- Handled or managed stress better
- Researched/educated themselves more about MS and its treatments
Getting the right diagnosis
“I wish I would have been more aggressive in getting a diagnosis. I allowed doctors to keep saying nothing was wrong with me, that I was too fat.”
Nailing down a multiple sclerosis diagnosis can be difficult since symptoms can look like other disorders. Looking back, many survey respondents said they wish they would have been more diligent about getting a diagnosis or would have sought out a diagnosis for their symptoms sooner.1
- 50 percent were diagnosed with another condition while trying to understand their MS symptoms
- Other diagnoses included depression, chronic fatigue syndrome, migraine, and fibromyalgia
Who the diagnosis comes from matters
“I wish I would have sought help to get a definitive diagnosis so I could have started taking a disease-modifying drug a lot sooner.”
Getting an accurate diagnosis is an important step in getting the right MS treatment. Since there is no definitive test for MS, having a reliable, knowledgeable, and trustworthy doctor can make a big difference in diagnosis and disease management.2
Many survey respondents said they wish they had visited a neurologist or better/different neurologist sooner.
- 56 percent received their diagnosis from an MS specialist or neurologist specializing in MS
- 68 percent see an MS specialist to manage their disease
Starting MS treatment earlier
Looking back, some survey respondents said they wish they would have started treatment/DMT earlier. Their responses show:
- 66 percent of those who have used a DMT started their treatment within 3 months of diagnosis
- 15 percent started DMT 2 or more years after diagnosis
Trying different MS treatments
“I wish I would have switched my medication a long time ago.”
There is no one best treatment for MS, and finding the right one for you can take time. Some survey respondents said that if they had a chance to start over, they would have switched treatment/DMT earlier.
26 percent of those who currently use a DMT are on their second treatment, while 49 percent are on their third or more DMT
Lifestyle and wellness regrets
“I wish I had changed [my] diet, and exercised more regularly.”
“I wish I would have changed diet and focused on physical therapy earlier. Also, focused on occupational therapy.”
Good nutrition, exercise, and stress management are all strategies that people living with MS use to improve physical and emotional wellness. However, some survey respondents said they wish they had taken better care of their bodies and lived healthier.
Taking care of emotional wellness
Depression and anxiety are common in people with MS, so managing emotional wellness is an important part of treatment. Some survey respondents said they should have managed their stress better.3
- 45 percent experienced anxiety in the past month
- Nearly 40 percent are interested in learning ways to manage anxiety, depression, and stress
- Some currently use counseling, mindfulness, acupuncture, massage, meditation, prayer, and yoga as complementary therapy
Self-educating and self-advocating
“I wish I would have researched information sooner after diagnosis instead of just wishing it would go away.”
“I wish I would have learned how to stand up for myself. I wish I would have not been afraid to talk [to] and question my doctor.”
It can be overwhelming to understand an MS diagnosis and learn how to manage symptoms. While most survey respondents said they generally feel confident using the internet to research health questions, some wish they educated themselves more about multiple sclerosis and treatment options.
While more than 75 percent of survey respondents said they are comfortable talking about their disease with their healthcare provider, some wish they would have spoken up for themselves more along the way.
The 2020 Multiple Sclerosis In America survey was held online from March through July 2020. 5,023 people completed the survey.
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