A multiple sclerosis diagnosis can be frightening and overwhelming, but while you may feel very much alone, you are by no means the only one dealing with this condition.
Multiple sclerosis is the most common disabling neurological disease in young adults, usually striking between ages 20 and 40, according to the National Institute of Neurological Disorders and Stroke. Nearly one million people in the United States are living with MS, per the National Multiple Sclerosis Society (NMSS), as are more than 2.8 million people worldwide. The good news: Most MS symptoms can usually be managed successfully, says Anthony Reder, MD, a multiple sclerosis specialist and professor of neurology at the University of Chicago.
“Symptom management gets better every year with new drugs, techniques, and lifestyle information,” he explains.
If you’ve been newly diagnosed with the disease, these tips can help prepare you for life with MS.
1. Learn as Much as Possible About MS
There are many myths and misconceptions about multiple sclerosis, and without the facts, your MS diagnosis can be scarier than necessary.
MS is a chronic inflammatory disease affecting the central nervous system. It occurs when the immune system causes inflammation that damages myelin — the protective insulation covering nerve fibers in the brain and spinal cord — as well as the nerve fibers themselves and the cells that make myelin, according to the NMSS.
This damage to the myelin or nerve fibers is what causes MS symptoms to occur, and the nature of the symptoms is influenced by where the myelin damage is located.
But MS is very rarely fatal, notes the NMSS, and it is possible to live a fulfilling life with the disease. Your doctor can help you understand more about MS and stay up to date on new treatments and lifestyle tips, including the importance of a healthy diet, establishing and maintaining a healthy weight, exercise, and quitting smoking if you have MS.
2. Be Sure Your MS Diagnosis Is Definitive
Various strategies are used to make a diagnosis of MS, including a neurological exam, magnetic resonance imaging (MRI), spinal fluid analysis (spinal tap), and blood tests to rule out other conditions, according to the NMSS.
In some cases, getting a definitive MS diagnosis can take quite some time, partly because other causes of neurological symptoms must also be ruled out.
According to the latest criteria, your physician must do all the following to make an MS diagnosis:
- Find evidence of damage in two separate areas of the central nervous system
- Find evidence that the incidents of damage occurred at different points in time
- Rule out all other possible diseases and diagnoses
3. Understand That MS Symptoms Can Be Unpredictable
No two people have exactly the same MS symptoms, and you may have different symptoms from time to time, per the NMSS. Common MS symptoms include numbness or tingling, spasticity, vision problems, walking difficulties, weakness, slurred speech, fatigue, bladder dysfunction, cognitive changes, and more. But these symptoms can be unpredictable.
“Over the course of the disease, some MS symptoms will come and go, while others may be long-lasting,” Dr. Reder says.
In Terms of Disparities, What Has Changed Over the Past 10 Years in MS Diagnosis and Treatment?
4. Don’t Delay MS Treatment
Because permanent neurological damage can happen even in the earliest stages of MS, it’s important to start treatment as early as possible, notes the NMSS.
“All disease-modifying therapies for MS may reduce chances of the disease becoming progressive,” says Reder.
There are quite a few FDA-approved disease-modifying therapies for MS that have been found to reduce the number of relapses, slow the progression of disability, and limit new disease activity, according to the NMSS. These medications for MS include injectable medications, oral medications, and infused medications.
Other medications are also used to treat MS symptoms, including bladder and bowel symptoms, depression, dizziness and vertigo, emotional changes, fatigue, itching, pain, sexual changes, spasticity, tremors, and walking (gait) difficulties.
RELATED: Multiple Sclerosis Treatment
5. Track Your MS Symptoms
Keeping a record of your MS symptoms and how you are feeling can help you update your doctor on your progress. Tracking your symptoms can also help you prepare a claim for disability benefits, if necessary, notes the NMSS. It can also help you stay on top of your symptoms if you’re experiencing memory problems or having trouble making connections, says Reder. The NMSS offers a full guide to the different potential disability benefits and required forms on its website.
6. Avoid MS Symptom Triggers
Certain triggers, like stress, lack of sleep, infections, viruses, and hot baths or anything else that can lead to overheating, can cause a temporary worsening of MS symptoms, says Reder. These triggers can cause minor relapses that aggravate symptoms in general, but are not due to new lesions or a worsening of the disease
Drinking alcohol in excess is discouraged for people with MS because intoxication causes poor coordination and slurred speech, which can compound existing MS symptoms, he adds.
7. Find the Right Doctor for You
MS is a lifelong disease, so it’s important to be under the care of an MS specialist who is a good match for you. The neurologist who provided your initial MS diagnosis may not be the specialist you want to stick with for life. The NMSS’s directory of providers and specialists can help you locate neurologists in your area (within the United States) with expertise in treating MS. Support groups for people with MS (available through hospitals and the NMSS) are also helpful for getting doctor referrals.
8. Consider Complementary and Alternative Medicine (CAM)
In addition to taking medication to control your MS symptoms, you may want to consider complementary and alternative treatments.
Most people who have MS use some form of CAM as part of their MS management plan, adds the NMSS.
Acupuncture may provide relief for some MS-related symptoms, including pain, spasticity, numbness and tingling, bladder problems, and depression; and a few small studies suggest that it may help with fatigue, pain, mood, and quality of life, per the NMSS.
Medical cannabis, or “medical marijuana,” may also help alleviate certain MS symptoms, says the NMSS. Reviews of published studies have mostly shown that synthetic cannabinoids have a positive effect on pain and spasticity.
Many people with MS also use massage to prevent or relieve spasticity, pain, poor circulation, and pressure sores, notes the NMSS.
9. Think About Whom You’ll Tell
You may be concerned that telling your employer that you have MS could affect your job security, employment options, and career path.
Before disclosing the disease at your workplace, learn about your rights under the Americans With Disabilities Act.
You’ll likely want to tell your closest family members and friends, particularly those who know you well enough to notice any changes. But you are not obligated to share news of your MS diagnosis with everyone in your life. Instead, pick the people who will be most supportive and helpful as you learn to live with the disease.
10. Don’t Give Up Hope
Depression is one of the most common symptoms of MS, according to the NMSS. If you’re struggling with depression or other mood changes, ask your doctor for a referral to a mental health professional who understands the challenges you are facing with MS and can help.
Although there currently is no cure for MS, newer treatments can slow the progression of the disease, improving your quality of life and helping to prevent disability. And research is ongoing, with the goal of developing even better treatments in the near future that will stop progression and even restore functions and abilities that have been lost.
Editorial Sources and Fact-Checking
- Multiple Sclerosis. National Institute of Neurological Disorders and Stroke. January 23, 2023.
- How Many People Live With MS? National Multiple Sclerosis Society.
- Definition of Multiple Sclerosis. National Multiple Sclerosis Society.
- Understanding Multiple Sclerosis. National Multiple Sclerosis Society.
- How Is Multiple Sclerosis Diagnosed? National Multiple Sclerosis Society.
- Unhealthy Habits. National Multiple Sclerosis Society.
- MS Signs and Symptoms. National Multiple Sclerosis Society.
- Medications. National Multiple Sclerosis Society.
- Disability Insurance. National Multiple Sclerosis Society.
- Find Doctors and Resources. National Multiple Sclerosis Society.
- Join a Local Support Group. National Multiple Sclerosis Society.
- Complementary and Alternative Medicines and Multiple Sclerosis. National Multiple Sclerosis Society.
- Acupuncture. National Multiple Sclerosis Society.
- Medical Marijuana (Cannabis) FAQs. National Multiple Sclerosis Society.
- Massage and Bodywork. National Multiple Sclerosis Society.
- Americans With Disabilities Act. U.S. Department of Labor.
- Depression. National Multiple Sclerosis Society.