A primary progressive multiple sclerosis (PPMS) diagnosis 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. With that being 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 is unknown, as in all forms of MS. Researchers believe environmental factors and genetics might play a role. Also, according to the National Institute of Neurological Disorders and Stroke, about 15 percent of people with MS have at least one family member with the condition. Smokers are also more likely to get MS.
Your doctor may not be able to tell you how exactly you developed PPMS, but they might ask questions about your personal and family health histories to gain a better overall picture.
2. What is different about PPMS compared to 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 have had symptoms for at least a year without remission.
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 a 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 it can take up to two or three years longer to diagnose PPMS than other forms of MS, according to the National MS Society. This is due to the complexity of the condition.
If you’ve just received a PPMS diagnosis, this 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 for patterns on your brain and spine through multiple MRIs.
6. How often will I need a checkup?
The National MS 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 PPMS so 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 of symptoms in PPMS tend to occur more quickly than other forms of MS. Therefore, your symptoms may not fluctuate as they would in relapsing forms of the disease. Without management, though, there is 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?
As of 2017, there are no FDA-approved drugs for the treatment of PPMS. Disease-modifying drugs are used in relapse-remitting forms of MS only. These help treat high levels of inflammation and lesions, which is something that PPMS has less of.
Research is ongoing to find medications that will reduce the neurological effects of PPMS.
9. Are there alternative therapies I can try?
Some try alternative and complementary therapies for MS, such as:
- 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 is 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.