Living With Multiple Sclerosis - The Ups and Downs

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The conversation continues on our Facebook page, where people are trading tips, getting inspired, and sharing stories. GILENYA is a prescription medicine used to treat relapsing forms of multiple sclerosis MS , to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults and children 10 years of age and older. You should not take GILENYA if in the last 6 months you experienced heart attack, unstable angina, stroke or mini-stroke transient ischemic attack or TIA , or certain types of heart failure.

Talk to your doctor if you are pregnant or planning to become pregnant. Tell your doctor about all your medical conditions, including if you had or now have an irregular or abnormal heartbeat; stroke or mini-stroke; heart problems; a history of repeated fainting; a fever or infection, or if you are unable to fight infections due to a disease or are taking medicines that lower your immune system, including corticosteroids, or have taken them in the past; eye problems; diabetes; breathing or liver problems; or uncontrolled high blood pressure.

Also tell your doctor if you have had chicken pox or have received the chicken pox vaccine.

Your doctor may test for the chicken pox virus, and you may need to get the full course of the chicken pox vaccine and wait 1 month before starting GILENYA. Tell your doctor about all the medicines you take or have recently taken, including prescription and over-the-counter medicines, vitamins, and herbal supplements. The most common side effects with GILENYA were headache, abnormal liver tests, diarrhea, cough, flu, sinusitis, back pain, abdominal pain, and pain in arms or legs. You are encouraged to report negative side effects of prescription drugs to the FDA.

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Unexplained Symptoms

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For US Residents Only. Ineabelle P. I dare you to break my spirit. Adults and children will be monitored by a health care professional for at least 6 hours after the first dose or after a child takes the first dose of 0. Your pulse and blood pressure will be checked hourly.

You'll get an ECG before and 6 hours after your first dose. If any heart problems arise or your heart rate is still low, you'll continue to be monitored.

Living with multiple sclerosis - CNN

If you have any serious side effects, especially those that require treatment with other medicines, or if you have certain types of heart problems, or if you're taking medicines that can affect your heart, you'll be watched overnight. If you experience slow heart rate, it will usually return to normal within 1 month. Call your doctor, or seek immediate medical attention if you have any symptoms of slow heart rate, such as dizziness, tiredness, feeling like your heart is beating slowly or skipping beats, or chest pain. Symptoms can happen up to 24 hours after the first dose. Increased risk of serious infections, some of which could be life threatening and cause death.

These may be symptoms of meningitis. Progressive multifocal leukoencephalopathy PML. PML is a rare brain infection that usually leads to death or severe disability. If PML happens, it usually happens in people with weakened immune systems but has happened in people who do not have weakened immune systems.


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Call your doctor right away if you have any new or worsening symptoms of PML that have lasted several days, including changes in your thinking or memory, changes in your vision, decreased strength, problems with balance, weakness on 1 side of your body, loss of coordination in your arms and legs, confusion, or changes in your personality. One day you wake up raring to go, and the next day, you're exhausted and can't move when your alarm goes off.

MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis (book)

That's why you should have a backup plan for mornings when you just need more time to get going. Maybe your partner needs to get the kids ready for school those days, or an older child can help out. If there's a solution already in place, having a setback doesn't have to spell disaster. Does heat make your multiple sclerosis symptoms worse?

Are you better able to concentrate in the morning? Plan your schedule so that you do the tasks that require concentration earlier in the day and take a break in the afternoon if need be. Share what you know about your multiple sclerosis symptoms with your family so they, too, can plan to provide help and support when you need it most.

You might be tempted to handle multiple sclerosis management all on your own, but you shouldn't. Assemble a support team of health care professionals who can help you manage your multiple sclerosis symptoms — your neurologist and perhaps a physical therapist, occupational therapist , or psychiatrist — and also recruit family members, friends, colleagues, and others with MS who can be there on days that you find you need more help.

Plus, there are lots of resources available to help with living with multiple sclerosis, both locally and on the Internet. Getting a good night's sleep is important for anyone, but sleep can be a problem when you have multiple sclerosis. Pain, spasticity, and bladder issues can keep you up at night, and when you don't sleep well at night, you can be more fatigued during the day. Costello suggests talking to your doctor about strategies to help you reduce pain and spasticity as well as treatments to address your bladder issues.

The better you sleep, the fewer bad days you may have. Because multiple sclerosis is a disease of the central nervous system, it can cause cognitive issues. This can present a particular problem when you're driving. Some people with multiple sclerosis get lost, Costello says — even in familiar places. She recommends getting a GPS for your car or a map app for your smartphone.

That way, you'll be prepared and won't panic if this happens to you. Part of multiple sclerosis management should include planning for the future. Costello says that many newly diagnosed patients ask if they immediately need to start thinking about long-term changes, like moving from a two-story house to a ranch-style home. That probably isn't a life change you need to make right away.

But you will want to think about your financial future and what can happen as your disease progresses.