UNDERSTANDING THE DIFFERENT TYPES OF MS
It has been said that every person with multiple sclerosis lives his or her life with a completely different illness! Different types of MS each have a very unique impact on a person’s health. No two people suffer exactly the same symptoms and it is often difficult for family and loved ones to begin to understand how traumatic it is for MS sufferers to live with the disconcerting barrage of attacks on their bodies daily. Nerve damage is always involved and the pattern is unique for each individual suffering with MS. Experiences with MS may be vastly varied, but medical professionals and research scientists have identified four main types of MS. These different types are important as they help identify how a person with MS will respond and benefit (or not) from treatment. Their names are based on the way that the disease impacts on the body over time. The type of MS that you have directly affects where you can be treated for HSCT and which facilities will accept you.
RELAPSE REMITTING MULTIPLE SCLEROSIS (RRMS)
SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS)
PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS (PPMS)
PROGRESSIVE RELAPSING MULTIPLE SCLEROSIS (PRMS)
RELAPSE REMITTING MS (RRMS)
The majority of individuals with multiple sclerosis – approximately 90% will suffer from relapsing-remitting MS. Generally speaking, symptoms will first appear any time between their early 20’s and their 40’s. Subsequently, periodic attacks (relapses) will be followed by complete or partial recovery (remissions). Relapse remitting MS (RRMS) as a label helps to identify your specific type of the disease and direct you to identify the most effective treatments available for this form. What it cannot do however is forewarn you on how this variety will affect your health in the short and long term. The map of nerves that are impacted and the severity of attacks coupled with the time between relapses all vary widely from person to person. The definition of a relapse has confounded neurologists for decades but is now acknowledged as an episode of neurological symptoms occurring at least 30 days post any previous episode, that lasts a minimum of 24 hours and is not directly attributable to another cause. It must also occur in the absence of any fever or obvious infection.
Previous symptoms might then appear in a different area of the body. Relapses symptoms may be mild to severe. Hospital treatment may be needed for the most severe but many can be treated at home with the support of care professionals such as an MS nurse or doctor. Relapses can also be described as a “flare up” or exacerbation.
The majority of disease modifying drugs (DMDs) are developed to treat this form of MS.
SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS
In most cases after living with relapsing-remitting MS for multiple years a large proportion of people will develop secondary progressive MS. This type of MS is identified by symptoms beginning a steady progression, without either relapses or remissions. (In this regard secondary progressive MS is comparable to primary progressive MS). The transition typically occurs between 10 and 20 years post diagnosis of relapsing-remitting MS. Although relapsing-remitting MS is characterized as unpredictable, the pattern of clear attacks followed by recovery tends to be consistent. With SPMS relapses are less distinct. When relapses do occur recovery is not as complete. Disabilities remain and appear worse in many respects.
Symptoms that may indicate you are progressing to SPMS include:
Tight and stiff feeling in the leg muscles
Increase in weakness and un-coordination
More pronounced fatigue and depression accompanied by more difficulty with cognitive issues than previously experienced
Bladder and bowel problems
Symptoms must be compared over a period of time to make a confirmed diagnosis of SPMS. Therefore it is important that you inform your neurologist of changes you notice. The older a person is when originally diagnosed the shorter the time for the disease to develop into a secondary progressive form. For SPMS sufferers who still experience relapses, some drugs may be helpful, but for those without relapses, the drugs are not generally considered useful and disease progression can increase.
PRIMARY PROGRESSIVE MS (PPMS)
Primary progressive MS gets its name because it impacts the person from the get-go (primary – first). In primary progressive MS early symptoms are often what appear to subtle problems with walking, which develop – often slowly – over time. Symptoms gradually get worse over time rather than appearing as sudden unexpected attacks. Approximately 10-15% of MS patients suffer with this form of the disease.
Symptoms however varied and whatever forms they take generally mean deterioration over time. Therefore despite the fact that over the long-term symptoms may gradually become worse, for extended periods of time they could remain much the same with no noticeable changes. Primary progressive MS is usually diagnosed when people in their forties or fifties. It can also however be diagnosed either earlier or later.
Unlike relapse remitting MS, with Primary Progressive equal numbers of men and women are diagnosed with this form. In other types of MS, women outnumber men three to one. People with primary progressive MS can experience many of the same symptoms as those with relapsing remitting MS. Unfortunately Primary progressive MS tends to lead to disability earlier than relapsing-remitting MS. Perhaps the most upsetting difference in primary progressive MS is its poor response to treatment. So far, no treatments have been shown to help other than HSCT, which stops the underlying disease progression and has shown improvement in disability for many of the PPMS patients treated under Dr Federenko at the AA Maximov Institute in Russia (please see HSCT Facilities).
PROGRESSIVE RELAPSING MS (PRMS)
Progressive-relapsing MS (PRMS) represents the minority of people affected by this disease. Five percent of people with MS are diagnosed with this form. Characterized by a steady progression in disability with frequent acute attacks that may or may not be followed by some recovery. People with progressive relapsing MS initially appear to have primary progressive MS. Aside from relapses, PRMS is marked by a consistent progression of decreased neurological function. Neurologists or health professionals can’t predict the rate that PRMS progresses. The progression is often a slow but steady process that spans many years. The most unfortunate cases of PRMS are marked by particularly rapid progression. PRMS is diagnosed when a patient who is originally diagnosed with Primary progressive MS, experiences a progressive decline in neurological function with a relapse, exacerbation or flare-up which is marked by a temporary worsening of symptoms or increased disability.