CPMS - What Is It?

By Lyndy. A. Potter M.A.(Clinical Psychology)

Disclaimer: This is a descriptive understanding of the different types of progressive MS - it is in NO WAY meant to diagnose or recommend treatments - please consult your medical team if you are concerned about any symptom, duration of illness or severity of illness. ©L.A.P. 1999. Not to be reprinted in part or whole without permission, also not to be copied electronically

GLOSSARY

CPMS:
Chronic Progressive Multiple Sclerosis. This term is no longer used as a diagnostic category of MS. It is ONLY used as an "umbrella term" to differentiate between Relapsing Remitting and Progressive MS.
PPMS:
Primary Progressive Multiple Sclerosis. Characterized by a steady progression of disability in the absence of a definable exacerbation.
SPMS:
Secondary Progressive Multiple Sclerosis. Characterized by a cessation of exacerbation, but with a continued progression of disability. The individual has a history of relapse/remit form of Multiple Sclerosis, prior to the onset of progression.
RPMS:
Relapsing Progressive Multiple Sclerosis. Characterized by the onset of an exacerbation, but in between attacks, the symptoms continue to worsen and disability progresses.
RRMS:
Relapsing Remitting Multiple Sclerosis. A clinical phase having distinct relapses (also called acute attacks or exacerbations), with either full recovery (no disability), or partial recovery and lasting disability. There is no visible disease progression (worsening) between attacks; but *stable* periods, span and mask, the continuing subclinical disease process.

Chemotherapy Drugs used to treat progressive MS

Azathioprine (Imuran): Imuran is a treatment most often used as an adjunct to chemotherapy in the treatment of cancer. It is also prescribed for the treatment of autoimmune diseases such as rheumatoid arthritis. Just over half of the trials (60%) in using this drug showed improvement in slowing progression.

Cladribine (Leustatin): No effect on the progression of ppms or spms has been demonstrated.

Cyclophosphamide (Cytoxan): Usually used in the treatment of cancer, Cytoxan is an immunosuppressive drug . It has been used in the treatment of both primary and secondary progressive MS, for approximately 20 years. While there have been mixed results in the success of this treatment it is one of the few treatments which offer a ray of hope for people with primary progressive ms. Many of the specialist centers in the United States use this form of treatment with probably a higher rate of success than is reported in studies. For more information regarding this treatment please email lapotter@bellsouth.net

Cyclosporine: Targets only one type of white blood cell – the helper T cells, rather than suppressing the whole immune system as with Cytoxan. A slight (but significant) effect on slowing the progression compared to the placebo group has been shown in controlled studies.

Methotrexate: It is not known why, but this treatment produces a a slowing of arm use deterioration only, with no benefit shown for the slowing of degeneration of leg functioning.

Back to Top

 

CPMS

The letters CPMS stand for Chronic Progressive MS. It is the old term that was used for all progressive MS types, but since research has enabled neuros to differentiate the different types of MS, it has become an umbrella term or short hand term for all the progressive types. So no matter whether you have PPMS, RPMS or SPMS - we ALL have Chronic Progressive MS. There are at present 3 types of progressive MS. These are Primary Progressive, Relapsing Progressive and Secondary Progressive. Relapsing progressive being the "newest" of the group.

PPMS

Primary Progressive MS, is often thought of as the most severe form in the sense that from onset to total disability is the shortest time span. However, even within this category there are differences in both rate of progression and severity of progression. Research has shown that MRI results indicate that people with Primary Progressive MS often have far more lesions and more widely spread throughout the CNS than any of the other types of MS - including SPMS. PPMS is characterized by an increasing steady decline in motor and often cognitive abilities. There is none of the characteristic "remissions" as experienced by people with RRMS. At best there may be experienced a "plateau" where the individual does not get any better but for a time at least the current symptoms do not worsen. A plateau is usually short lived before the illness resumes the progressive process.

Once symptoms appear they generally continue to become increasingly more frequent and severe. For example, one may experience some "different" kinesthetic sensations - in other words feelings on the skin of the hands, arms, feet, legs etc., which the person describes as "unusual". These sensations over time may become more pronounced and are often identified as "tingles", then further along as "pins and needles". Sometimes the feelings then progress to either pain or numbness or both. For other folks or even other areas of the body in the same person, the symptoms may begin as numbness or tingles or pins and needles - it depends on the extent of damage and location of damage to the myelin coating.

Another example is with the arms or legs may feel "heavy" or swollen at first, then become increasingly unresponsive and may become paralyzed. How quickly this all occurs differs from one person to another and even for an individual and while some situations, such as prolonged illness, intense stress or exhaustion, may hasten the process, no one is quite certain why. For example, some individuals, from diagnosis to total disability may be as quick as 2 years, others 4, or 10 or more. Where the worst of the progressive symptomology appears, depends on where the lesions are located within the CNS. Naturally spinal lesions will result in a greater motor deficit.

Because PPMS results in both a greater quantity of lesions and more widespread disbursement, people with PPMS accordingly show a greater range of symptomology than people with RRMS do. That is, the most common symptoms reported by pwms are fatigue, numbness, tingling, pins and needles, cramps, spasms, visual problems, memory problems and difficulty with concentration and attention, spatial orientation and coordination, bowel and bladder and sexual dysfunction. For people with RRMS, they may experience some of those symptoms, for PPMS folks they almost all develop all of the symptoms at some time. Consequently, total disability follows as more deficits occur.

Of all the types of MS, PPMS is the least common type and depending on who or what you read, the percentage changes also - for example 1% to 5% of all pwms are diagnosed PPMS. While there are many drugs and treatments being trialed, there is to date no known totally effective treatment for PPMS. It is hoped that with the continued research that a drug or combination of drugs may be useful in halting or slowing the progression. There have been some encouraging results with the use of chemotherapy and steroidal treatments in slowing the progression in some people. The theory for using chemotherapy is that MS is assumed to be caused by an over active immune system. By depleting the white blood cells, it is hoped that the immune response will either not occur, or not occur with as great a response. Therefore, minimizing the damage and slowing the progression of the disease.

SPMS

Secondary Progressive MS is characterized by a pattern of Relapsing Remitting MS in the beginning. This may last for quite some years or only 2 years...again no one is able to predict how long a person may remain RRMS before progressing to SPMS. Approximately 40 to 50% of the relapse remit type of MS sufferers go on to become secondary progressive. It is also not known what triggers cause the cessation of remission and the onset of the progression of the disease.

Once an individual becomes SP, the pattern of symptoms, severity and disability is similar to that of Primary Progressive. If there is an "upside" to SPMS compared to PPMS, it is that it may take years of relatively uncomplicated, able living with the RR pattern before the onset of progression.

Again it must be noted that people do vary in their rate of progression and severity of disability. Also the quantity and severity of relapses and time between "flares or attacks" also varies. With the advent of the ABC drugs, it is hoped that less people will progress to SPMS, and that the deterioration and increase in symptomology will also be alleviated somewhat through treatment. In other words we hope that researchers may develop treatments to drastically slow the disease and thus increase the quantity of life while increasing the quality for the individuals.

New studies have also shown that the sooner an individual with SPMS is treated with Betaseron, the greater the potential there is to slowing the progression and subsequent disability.

RPMS

Relapsing Progressive MS is a relatively recently discovered variation of the illness. It is characterized by the similar pattern of severe exacerbation, such as blindness or paralysis that people with RRMS experience. However, rather than returning to full recovery of functioning with some residual symptoms - such as tingles, numbness, as is the case with RRMS, the folks with RPMS show a pattern of progression between exacerbation''s.

It is probably best understood as being like PPMS only with the major exacerbations of RRMS.

Mail to Lyndy at lapotter@bellsouth.net

For support, educational materials and friendship for people with progressive MS and their carers please go to: http://forums.delphiforums.com/PMSSG

Back to Top