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My doctor says that I am now secondary-progressive. I have been taking my disease-modifying therapy regularly so I don’t understand why this happened. Did I do something wrong?
No, you did not do anything wrong. Natural history studies of MS indicate that the majority of people eventually transition from a relapsing-remitting (RRMS) disease course to a more progressive one. While the disease-modifying therapies help to reduce the number and severity of relapses (also called attacks or exacerbations) in relapsing forms of MS, and seem to have some impact on disease progression, they are unable to halt the progression completely.
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Does having secondary-progressive MS mean that I’ll end up in a wheelchair?
In secondary-progressive MS, a transition occurs from the more inflammatory disease process seen in RRMS to a more steadily progressive phase of the disease characterized by greater nerve damage or loss. During this phase, relapses become less frequent or — stop happening altogether — and people experience gradual changes in function, with or without some periods of stability along the way. The speed of disease progression in SPMS, and the particular symptoms that occur, vary significantly from one person to another. This means that some people with progressive MS will experience more disability than others. Over time, more than two-thirds of people remain able to walk, although they may need an ambulation aid such as a cane or walker to do so. Some may choose to use a motorized scooter or wheelchair for long distances, in order to conserve energy and remain more active; others may need to use a wheelchair all the time.
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If Novantrone is the only medication specifically approved by the FDA for secondary-progressive MS, why doesn’t everyone with SPMS take that medication?
Novantrone was originally developed as a cancer treatment and is used as an immunosuppressant medication in MS, which means that it suppresses or shuts down a person’s immune system. While this can be an effective strategy for treating MS-related disease activity, it carries with it other kinds of risks, including certain cardiac problems, a greater susceptibility to various types of infections, and an increased risk of secondary acute myelogenous leukemia. Due to the significant risks associated with Novantrone, it is rarely used at this time.
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I was just diagnosed with MS and my doctor says that my course is secondary-progressive MS. If I never had relapsing-remitting MS, how could I have SPMS now?
If your physician says that you are currently in the secondary-progressive phase of the disease, it likely means that you passed through a relapsing-remitting phase without knowing it, perhaps as a teenager or very young adult. Some MS relapses (also called attacks or exacerbations) are so mild and fleeting that they go unrecognized or are mis-identified as a brief virus or passing problem. For example, a person may experience brief bouts of fatigue, a day or two of blurry vision, or some numbness or tingling in an arm or leg that is soon forgotten. If you experienced any brief episodes of this kind, which quickly resolved with no leftover symptoms, you could easily have passed through the relapsing-remitting phase of the illness without ever being diagnosed.