A diagnosis of primary progressive multiple sclerosis (PPMS) can be overwhelming at first. The condition itself is complex, and there are so many unknown factors because of the way multiple sclerosis (MS) manifests differently among individuals.
That said, you can take actions now that may help you manage PPMS while preventing complications that can get in the way of your quality of life.
Your first step is to have an honest conversation with your doctor. Consider bringing this list of 11 questions with you to your appointment as a PPMS discussion guide.
1. How did I get PPMS?
The exact cause of PPMS, and all other forms of MS, is unknown. Researchers believe environmental factors and genetics might play a role in the development of MS.
Also, according to the National Institute of Neurological Disorders and Stroke (NINDS), about 15 percent of people with MS have at least one family member with the condition. People who smoke are also more likely to get MS.
Your doctor may not be able to tell you how exactly you developed PPMS. However, they might ask questions about your personal and family health histories to gain a better overall picture.
2. How is PPMS different from other types of MS?
PPMS is different in several ways. The condition:
- causes disability sooner than other forms of MS
- causes less inflammation overall
- produces fewer lesions in the brain
- causes more spinal cord lesions
- tends to affect adults later in life
- is overall more difficult to diagnose
3. How will you diagnose my condition?
PPMS may be diagnosed if you have at least one brain lesion, at least two spinal cord lesions, or an elevated immunoglobulin G (IgG) index in your spinal fluid.
Also, unlike other forms of MS, PPMS may be evident if you’ve had symptoms that continuously worsen for at least a year without remission.
In the relapsing-remitting form of MS, during exacerbations (flare-ups), the degree of disability (symptoms) get worse, and then they either go away or partially resolve during remission. PPMS may have periods when the symptoms don’t get worse, but those symptoms don’t lessen to earlier levels.
4. What exactly are lesions in PPMS?
Lesions, or plaques, are found in all forms of MS. These primarily occur on your brain, though they develop more so in your spine in PPMS.
Lesions develop as an inflammatory response when your immune system destroys its own myelin. Myelin is the protective sheath that surrounds nerve fibers. These lesions develop over time and are detected through MRI scans.
5. How long does it take to diagnose PPMS?
Sometimes diagnosing PPMS can take up to two or three years longer than diagnosing relapsing-remitting MS (RRMS), according to the National Multiple Sclerosis Society. This is due to the complexity of the condition.
If you’ve just received a PPMS diagnosis, it likely stemmed from months or even years of testing and follow-up.
If you haven’t received a diagnosis for a form of MS yet, know that it can take a long time to diagnose. This is because your doctor will need to look through multiple MRIs to identify patterns on your brain and spine.
6. How often will I need a checkup?
The National Multiple Sclerosis Society recommends an annual MRI as well as a neurological exam at least once a year.
This will help determine whether your condition is relapsing or progressing. Additionally, MRIs can help your doctor chart the course of your PPMS so that they can recommend the right treatments. Knowing the progression of the disease might help thwart the onset of disability.
Your doctor will offer specific follow-up recommendations. You may also need to visit them more often if you start experiencing worsening symptoms.
7. Will my symptoms get worse?
The onset and progression of symptoms in PPMS tend to occur more quickly than in other forms of MS. Therefore, your symptoms may not fluctuate as they would in relapsing forms of the disease but continue to steadily worsen.
As PPMS progresses, there’s a risk of disability. Due to more lesions on your spine, PPMS can cause more walking difficulties. You may also experience worsening depression, fatigue, and decision-making skills.
8. What medications will you prescribe?
In 2017, the Food and Drug Administration (FDA) approved ocrelizumab (Ocrevus), the first medication available for use in treating PPMS. This disease-modifying therapy is also approved to treat RRMS.
Research is ongoing to find medications that will reduce the neurological effects of PPMS.
9. Are there alternative therapies I can try?
Alternative and complementary therapies that have been used for MS include:
- herbal supplements
- tai chi
Safety with alternative therapies is a concern. If you take any medications, herbal supplements might cause interactions. You should only try yoga and tai chi with a certified instructor that’s familiar with MS — this way, they can help you safely modify any poses as needed.
Talk to your doctor before trying out any alternative remedies for PPMS.
10. What can I do to manage my condition?
PPMS management is greatly dependent on:
- mobility assistance
- a healthy diet
- regular exercise
- emotional support
In addition to offering recommendations in these areas, your doctor may also refer you to other types of specialists. These include physical or occupational therapists, dietitians, and support group therapists.
11. Is there a cure for PPMS?
Currently, there’s no cure for any form of MS — this includes PPMS. The goal then is to manage your condition to prevent worsening symptoms and disability.
Your doctor will help you determine the best course for PPMS management. Don’t be afraid to make follow-up appointments if you feel like you need more management tips.