My goal with this post is to put information regarding SPMS into one post so that other people do not need to go looking at 20 different sites for information.
Let’s start with this from Cedars Sinai – “The MS disease course varies across individuals and not all patients who have RRMS will develop SPMS. Currently it is not possible to predict who will eventually develop SPMS, but individuals who have frequent severe relapses and large numbers of brain and spinal cord at the time of diagnosis seem to be at higher risk. There is some evidence that the use of effective medications during the RRMS phase of the disease can slow down or possibly prevent the transition to SPMS.” — “There is no single diagnostic procedure to confirm SPMS. Generally, after a diagnosis of RRMS has been established, the physician will observe the patient’s symptoms over a period of time in order to determine if they are associated with SPMS.”
An article from Healthline states “SPMS develops as a result of neuronal loss and atrophy. If you notice your symptoms becoming worse without any remission or noticeable relapse, an MRI scan may aid in the diagnosis. MRI scans can show the level of cell death and brain atrophy. An MRI will show increased contrast during an attack because leaking of the capillaries during an attack causes a greater uptake of the gadolinium dye used in MRI scans.” Typically you will receive medication (now that there are forms for SPMS) to try and slow down the progression of it as much as they can since it is still possible to have relapses in the secondary form of MS. “The average life expectancy for people with MS tends to be about 7 years shorter than the general population. It’s not entirely clear why.”
Information about SPMS from the National MS Society in the US indicate “SPMS occurs in people who initially had a relapsing-remitting disease course. In other words, SPMS occurs as a second phase of the disease for many individuals. In SPMS, people may or may not continue to experience relapses caused by inflammation; the disease gradually changes from the inflammatory process seen in RRMS to a more steadily progressive phase characterized by nerve damage or loss.” Also, “Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS.“
This WebMD article has some other information “Along with these signs, there are other symptoms that might show you’re shifting to SPMS:
- More weakness and more trouble with coordination
- Stiff, tight leg muscles
- Bowel and bladder problems
- A harder time with fatigue, depression, and problems thinking
Your doctor can only diagnose SPMS by comparing your symptoms over time. So it’s important that you tell her about any changes in your symptoms.”
Multiple Sclerosis News Today states: “Incomplete recovery from an initial exacerbation also is associated with a shorter time to secondary progression. In some studies, male sex was associated with a shorter time to secondary progression than female sex, but data are inconsistent. Several studies reported that visual or sensory, and sometimes brain-stem-related symptoms are associated with an increased time to secondary progression. In contrast, spinal cord-related symptoms are associated with shorter time to secondary progression. In some studies, the number of relapses during the first two-to-five years of the disease was inversely related to the time to secondary progression, but the data are inconsistent.” Also, “A 2013 review study published in the Neurology journal, citing data “from numerous large cohort registries”— “Mortality in patients with multiple sclerosis” — estimated that people with MS live on average 7–14 fewer years others. It, however, also considers MS and survival a “poorly described aspect of the disease.” The study found many factors that affect life expectancy in these patients, including the age at MS onset, the level of severity, the rate of disease progression, and types of treatment available. Long-term disability is not necessarily a cause of death for MS patients.”
(Also from the above article) “Patients with SPMS also may experience less common symptoms. These symptoms are often paroxysmal, which means that they are felt suddenly and disappear quickly.
Such symptoms include the following:
- trigeminal neuralgia, a condition that affects the trigeminal nerve, characterized by a sudden burning sensation in the face
- pseudobulbar affect, which is caused by lesions in the amygdala, a brain region that controls emotions, and is characterized by unprovoked crying or laughing
- the feeling of electric shocks along the spine, which are caused by inappropriate communication between damaged nerves in the neck and the brain
- unusual sensory symptoms, such as a strange sensation of cold or wetness along the limbs
- dysesthesia, which is an abnormal and unpleasant sense of touch, such as the feeling of a tight hug and itchiness
- blurred vision
- optical illusions
- seizure-like spasms in the arms and legs
- dizziness, vertigo, and migraines”
I was intrigued to learn the main difference between RRMS and SPMS is the fact that RRMS shows lesions (active and non-active) where as SPMS no longer shows lesions but black spaces where lesions used to be and that is the cause of brain atrophy.