A Word about Progressive Forms of Multiple Sclerosis

If you’ve been diagnosed with primary-progressive multiple sclerosis (MS), or your MS has become secondary-progressive without any more relapses, it is likely that you’re impatiently waiting to hear what treatments are available for you. The entire MS community — including healthcare professionals, scientists, and people with MS — is waiting along with you.

Many standard MS treatments primarily target inflammation in the CNS. And because little or no inflammation is involved in primary-progressive MS or the later phase of secondary progressive MS, these medications aren’t likely to be as effective for you.

Scientists and clinicians are working to understand the underlying mechanisms of disease progression in order to develop more effective treatments to stop it. In the meantime, several different agents are currently being evaluated in clinical trials of primary-progressive and secondary-progressive MS.

Research is under way to find ways to restore functions that have been lost as a result of damage to the myelin and axons in the CNS. Medications to slow progression of MS are important, but they aren’t enough. People who have lost the ability to do things that are important to them because of MS want the bigger fix, and strategies to repair damage in the CNS are an important step in that direction.

Scientists are working on strategies to stimulate and speed up myelin’s natural ability to repair itself. And cell therapies of various kinds are already in clinical trials to evaluate their ability to rebuild the damaged nervous system. You can read more about important research initiatives in MS in the National MS Society’s booklet, Research Directions in Multiple Sclerosis.

While the wait is on for more treatment options, there’s still a lot you can do to take care of yourself. Symptom management and rehab strategies can help you to discover how you feel and function at your best.

And for an in-depth look at how to live more comfortably with progressive forms of MS, check out the book Living with Progressive Multiple Sclerosis: Overcoming the Challenges, second edition, by Patricia Coyle, MD, and June Halper, MSN, APN-C, FAAN, MSCN (Demos Health).

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