The Course of MS


MS disease categories are useful in helping people with MS and their healthcare providers make appropriate treatment decisions.

The International Advisory Committee on Clinical Trials of MS in 2013 (Lublin 2014) has characterized the basic categories of MS:


Instant Feedback:
The majority of people with MS are initially diagnosed with the primary-progressive form of the disease.

True
False


Life Span: Data derived from a study of more than 1000 Canadian patients followed for a mean of 25 years indicates that the lives of MS patients are shortened about 5-7 years less than the uninsured general population. Suicide is one factor that contributed to the overall reduction in cohort lifespan.

Disability: Many tools have been developed to measure the progressive disability that often accompanies a diagnosis of MS. None of these tools can fully capture the physical and mental toll exacted by MS .

With that said, the EDSS (extended disability status score) has often been used in clinical studies to measure treatment outcomes. The EDSS was developed and refined by the eminent MS neurologist, Dr. John Kurtzke. The scale assists clinicians to assign a value to a patient's condition and follow the progression of MS over time. Critics of the EDSS point to the lack of cognitive and psychological assessment. We offer this version simply as a series of markers on the roadmap of MS progression.

Normal neurological exam 0.0

Normal Functional Systems Score in all 8 Functional Systems:

  1. pyramidal - voluntary movement, (weakness or difficulty moving limbs)
  2. cerebellar - coordinated movement, balance, (ataxia, loss of coordination or tremor)
  3. brainstem - eye movement (nystagmus), facial movement, swallowing (aspiration), speech
  4. sensory - (numbness)
  5. bowel or bladder (constipation, incontinence: urgency, frequency, hesitancy, retention)
  6. visual (optic neuritis, diplopia, nystagmus)
  7. cerebral - memory, cognition, concentration, mood
  8. other - fatigue
Fully ambulatory 1.0 No disability, minimal sign in one functional system.
1.5 No disability, minimal signs in more than one functional system.
2.0 Minimal disability in 1 FS
2.5 Mild disability in 1 FS or minimal disability in 2 FS
3.0 Moderate disability 1 FS, or mild disability in 3-4 FS.
3.5 Moderate disability in one FS and more than minimal disability in 3 or more others
4.0 Self-sufficient, up and about some 12 hours a day despite relatively severe disability in an FS; able to walk 500 meters without aid or rest
4.5 Self-sufficient, able to work a full day; may otherwise have some limitation of full activity or require minimal assistance. This is considered relatively severe disability. Able to walk 300 meters without aid.
Ambulation or self-sufficiency severly impaired 5.0 Ambulation limited to about 200 meters without aid or rest. Disability impairs working a full day without special provisions.
5.5 Ambulation limited to about 100 meters without aid or rest. Disability impairs full daily activities.
6.0 Ambulation limited to about 100 meters requires aid of a single cane, crutch, or brace
6.5 Ambulation requires aid of bilateral assistance (two canes, two crutches, two braces or walker) to cover 20 meters.
7.0 Ambulation limited to about 5 meters with aid, mobililty dependant upon standard wheelchair and self transfers.
7.5 May be able to take a few steps but mobililty dependant upon wheelchair, may require motorized wheelchair and assistance to transfer.
8.0 Generally retains use of arms and much of self care. Activity limited to bed, chair or perambulation in wheelchair. estricted to
8.5 Activity limited to bed, retains some use of arms and some self care functions
9.0 Activity restricted to bed, can communicate and eat but is dependent for most physical needs.
9.5 Activity restricted to bed, unable to communicate and eat/swallow. Totally dependent for physical needs.
Adapted from EDSS table accessed 8/20/05, National Multiple Sclerosis Society
(http://www.nationalmssociety.org/Sourcebook-EDSS.asp )
10.0 Death due to MS

Reference

Lublin, F. D., Reingold, S. C., Cohen, J. A., Cutter, G. R., Sørensen, P. S., Thompson, A. J., … Polman, C. H. (2014). Defining the clinical course of multiple sclerosis: the 2013 revisions. Neurology, 83(3), 278–286.


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