Primary progressive multiple sclerosis (PPMS) doesn’t have a cure, but many options exist for managing the condition. Treatment focuses on alleviating symptoms while slowing the possibility of PPMS causing permanent disability.
While your doctor is your first source for treating PPMS, there aren’t any medications proven to treat the condition. However, your doctor can refer you to other specialists to help you manage PPMS symptoms. They can also offer you management advice as they monitor the progression of the disease.
In addition to your doctor, you might consider other resources for PPMS treatment. While you should always run any new treatment options by your doctor before trying them out, learn here about the possibilities.
Research from the NINDS
The National Institute of Neurological Disorders and Stroke (NINDS) has ongoing research efforts about multiple sclerosis (MS), including progressive forms. As a branch of the National Institutes of Health, the NINDS is supported by government funds. Currently, the NINDS is investigating drugs that can modify myelin and genes that could potentially prevent the onset of PPMS.
Drugs that are prescribed for remitting-relapsing forms of MS aren’t approved by the U.S. Food and Drug Administration for PPMS. Yet research is still being done on types of medications that might help progressive forms of MS.
For example, according to the NINDS, the development of certain therapeutic drugs shows some promise. These would work by preventing myelin cells from becoming inflamed and turning into lesions. The drugs could either protect myelin cells or help repair them after an inflammatory attack.
Other possible drug therapies are being investigated to promote oligodendrocytes in the brain. These would help create new myelin cells.
Though the precise cause of PPMS — and MS overall — isn’t known, it’s thought a genetic component may contribute to disease development. Research is being done to help better understand the role of genes in PPMS. The NINDS refers to genes that might increase the risk of MS as “susceptibility genes,” and the organization is looking into possible drugs that can modify these genes before MS develops.
The National Multiple Sclerosis Society is another organization that offers updates on MS treatment innovations. Unlike the NINDS, the society is a nonprofit organization. Their mission is to spread awareness about MS while also embarking on fundraising efforts to support medical research.
As a part of its mission to support patient advocacy, the National MS Society frequently updates resources on its website. Because there are currently no medications used to treat PPMS, you may find the society’s resources on rehabilitation helpful. Here they outline:
- physical therapy
- occupational therapy
- vocational therapy (for jobs)
- cognitive rehab
- speech-language pathology
Physical and occupational therapies are the most common forms of rehabilitation in PPMS. Following are some of the current innovations involving these two therapies.
Physical therapy and research in exercise
Physical therapy (PT) is used as a form of rehabilitation in PPMS. The goals of PT can vary based on the severity of your symptoms. It’s primarily used to:
- help people with PPMS perform everyday tasks
- encourage independence
- improve safety — for example, teaching balancing techniques that can reduce risk of falls
- reduce the chances of disability
- provide emotional support
- determine the need for assistive devices at home
- improve overall quality of life
Exercise is an important part of PT. It helps improve your mobility, strength, and range of motion so you can maintain independence.
Research is also continuing to look at the benefits of aerobic exercise in all forms of MS. According to the National Multiple Sclerosis Society, exercise wasn’t widely advised until the mid-1990s, when the theory that exercise wasn’t good for MS was finally debunked. Your physical therapist can recommend aerobic exercises you can do safely in between appointments to improve your symptoms and build your strength.
Your doctor will likely recommend physical therapy soon after your initial diagnosis. Being proactive about this treatment option is important — don’t wait until your symptoms progress.
Innovations in occupational therapy
The U.S. Department of Veterans Affairs defines occupational therapy (OT) as a process that helps with “all of those tasks and activities that take our time and energy, and provide meaning and focus in our everyday lives.” OT is increasingly being recognized as an asset in PPMS treatment not only for self-care and work, but also to help with:
- leisure activities
- home management
OT is often perceived as being the same as PT. Although both types of therapies complement each other, they each focus on different aspects of PPMS treatment. PT can support your overall strength and mobility, and OT can help with activities that affect your independence, such as bathing and getting dressed on your own. So it’s recommended that PPMS patients seek both PT and OT evaluations and subsequent treatment.
Clinical trials for PPMS
You can also read about current treatment measures being tested in people with PPMS through ClinicalTrials.gov. This is another branch of the National Institutes of Health, whose mission is to offer a “registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.” In the Search for Studies field, enter “PPMS” to find numerous active and completed studies involving medications and other factors that can affect the disease.
Additionally, you might consider participating in a clinical trial. This is a serious commitment that requires a discussion with your doctor first to ensure safety.
The future of PPMS treatment
As of 2017, there is no cure for PPMS, and research is still being done to explore possible medications that can help control progressive symptoms. Aside from checking in with your doctor regularly, use these resources to keep informed about the latest updates within PPMS research. From medications and rehabilitation methods to clinical trials, much work is being done to better understand PPMS and to treat patients more effectively.