What a lot of people don’t realize is that there are multiple types of multiple sclerosis. Primary progressive multiple sclerosis is only diagnosed in a small number of patients with MS and doesn’t have the opportunity for relapse, mostly because it doesn’t go into remission. What characterizes PPMS to identify it separately from other types of MS?
Characteristics of primary progressive multiple sclerosis
Most of the time, primary progressive multiple sclerosis is diagnosed in an older population than other types of MS. More importantly, this form of the disease continues to cause deterioration, with symptoms worsening, once it starts to affect the body. Knowing the causes and symptoms for early identification can go a long way in reducing the effects or slowing the progression of the disease, especially in PPMS.
Causes of multiple sclerosis
MS is an autoimmune disease, which means that it is the result of the body’s attack on itself by the immune system. Several diseases are caused by this “malfunction” of the body. In the case of multiple sclerosis, the target of the immune system is myelin, which is the substance that coats the nerves located in the spinal cord and the brain.
In other types of MS, there is significant inflammation caused by this attack on myelin. However, with PPMS, inflammation is minimal. Instead, the major problems result from damage to the nerves and the growth of scar tissue along these areas in the spinal cord and brain. Doctors refer to this scar tissue as legions, which keep proper signaling from occurring, thus causing the symptoms of multiple sclerosis.
What are the symptoms of primary progressive multiple sclerosis?
Most patients diagnosed with PPMS first notice weakening of their legs to a point that they visit their doctors. Other initial symptoms include:
- Stiffening of the legs
- Balance issues
- Trouble walking
Other symptoms that could strike early on are:
- Fatigue and consistent pain
- Consistent headaches
- Trouble speaking or swallowing
- Problems with vision
- Difficulty controlling the bladder or bowels
Some of the more severe symptoms can also include:
- The sensation of an electric shock through the back and limbs when the neck is bent
- Numbness and prickling
- Dizziness or extreme shakiness
- Paralysis, temporary or permanent
- A difficulty with clear thought processes
- Inexplicable mood swings
- Symptoms of depression
Diagnosing primary progressive multiple sclerosis
A doctor has several methods by which to determine if a patient has PPMS. The process of diagnosing the disease starts with a discussion of the symptoms experienced to form a clear picture of medical history and changes to your health. This will likely progress into a physical exam, checking the current function of nerves and muscles.
The next step may be an MRI of the brain and spinal cord. These images would capture any evidence of damage to the nerves or inflammation in the spinal cord or brain that could point to MS.
Alternatively, there are two tests that utilize the eyes to make a determination. Visual evoked potentials, or VEP, tests the functionality of the optic nerve, while an optical coherence tomography (OCT) would measure the nerve fibers located within the retina.
A lumbar puncture, also known as a spinal tap, involves drawing out a sample of spinal fluid so it can be tested to see if it reveals any signs of MS.
Unfortunately, unless there is already serious progression, most tests won’t offer much knowledge as to whether or not the type of multiple sclerosis might be PPMS, since nerve damage occurs and worsens over time. That means that, even though a diagnosis of MS may be made, it may not be determined that the condition is primary progressive multiple sclerosis for years.
There is no cure for PPMS, and as the definition of this type of multiple sclerosis is that symptoms worsen over time, the primary objective for patients with the disease is to find a way to manage the symptoms to the best of their ability.
Because symptoms often worsen if the body temperature increases, those with PPMS should avoid spending an extended period of time in the sun or exercising at great lengths without sufficient cooling air. Anything that causes overexertion could cause the body temperature to increase, which would lead to more prevalent symptoms.
On the other hand, regular exercise could help reduce the severity of symptoms, mainly stiffness and pain, while getting plenty of sleep will lessen the effects of weakening muscles and joints. In fact, many patients get involved with physical and occupational therapists to learn more about the techniques that work best and strategies for the management of new symptoms.
If issues with speech become a problem, there are also speech therapists available that can assist with reducing the damage this does, including social anxiety and nervousness around others due to the changes in voice or modulation. This sort of therapy can also assist with issues swallowing.
Medication for PPMS
Ocrelizumab hasn’t been around long, but it’s shown promise for people suffering from primary progressive multiple sclerosis. Basically, it reduces the number of cells in the blood stream that initiate the attack on the body by the immune system. This reduces inflammation and slows the progress of nerve damage, which also helps to slow the overall progress of the disease.
This medication is given as an infusion, similar to the way chemotherapy is administered, under a physician’s supervision every six months. It’s considered a first line medication, which means the patient doesn’t have to attempt other treatments and “fail” in order to receive this therapy. The most common side effects are skin itch or rash, a flushed face, or fever.
Some medications may be prescribed to help manage certain symptoms that are more prevalent and debilitating than others, such as medicine for:
- Tight and stiff muscles
- A difficulty with bladder and bowel control
- General pain
- Debilitating fatigue