How Do I Know if My MS is Worsening?

Relapses once every 2 years is higher than most patients on treatment and concerning for inadequately controlled disease.

Relapses are attacks or exacerbations of a new neurological symptom(s) or a recurrence of an old symptom (not experienced in the past 30 days) that must last at least 24 hours.  Examples of a significant attack or exacerbation are both legs becoming weak for 2 months or severe visual loss out of one eye for two weeks.   Fever or infections such as urinary tract infections (bladder infections) can transient bring out old neurological symptoms call pseudorelapses.

For an acute relapse, methylprednisolone (Solu-medrol) is generally given as 1 gm in the veins over 1 hour daily for 3-5 days. Many neurologists follow the course of steroids in the vein with oral steroids, but there is no evidence that the oral steroids are necessary and generally no oral steroid taper is given in clinical trials for attacks. Trouble sleeping, high blood sugar, and rare hip bone injury are some side effects and risks of the steroid infusion. Relapses without treatment occur on average less than once every 2 years.  On treatment, relapses can be reduced to one every 3-6 years.  Some medications have shown higher ability to control relapses than other medications.

Another sign of worsening disease is developing more disability. For example, developing worsening balance over a year to the point of now needing a cane.  If you noticed that the physical ability is worsening over the past 6 months or year, inform your healthcare provider.   Also, report changes in cognition such as short-term memory loss, multitasking problems and word-finding difficulties.

New MRI lesions on the brain or spinal cord over one to two years may indicate inadequately controlled disease.  Minimal MRI change without relapses or worsening disability might be monitored with follow-up MRI imaging.  However, new MRI changes on treatment for one year makes you at higher risk of disability compared to someone without MRI change.  The more new MRI activity, the higher risk for disability progression.  MRI change alone could prompt a decision between you and your neurologist to consider other treatment options.