Pittock SJ, Mayr WT, McClelland RL, Jorgensen NW, Weigand SD, Noseworthy JH, Rodriguez M.
Department of Neurology, Mayo Clinic, Rochester, MN 55905, USA. firstname.lastname@example.org
OBJECTIVE: To assess whether the level of multiple sclerosis (MS) -related disability in the Olmsted County population has changed over a decade, and to evaluate how the rate of initial progression to moderate disability impacts further disability. METHODS: The Minimal Record of Disability (MRD) measured impairment, disability, and handicap for the 2000 (n = 201) prevalence cohort. The authors compared these results with the 1991 (n = 162) cohort; 115 patients were in both cohorts. The authors assessed retrospectively intervals at which Expanded Disability Status Scale (EDSS) scores of 3 (moderate disability), 6 (cane), and 8 (wheelchair) were reached. RESULTS: The distribution of the 2000 EDSS and MRD scores were not significantly different from the 1991 distribution. The median time from MS diagnosis, for the entire cohort, to EDSS scores of 3 and 6 was 17 and 24 years, respectively. At 20 years after onset, only 25% of those with relapsing-remitting MS had EDSS scores > or =3. The median time from diagnosis to EDSS score of 6 for the secondary and primary progressive groups was 10 and 3 years, respectively. Rate of progression from onset or diagnosis to EDSS score of 3 did not affect the rate of further disease progression. However, once an EDSS score of 3 was reached, progression of disability was more likely, and rate of progression increased. CONCLUSIONS: The distribution of multiple sclerosis disability in the Olmsted community has remained stable for 10 years. Progression of disability for patients with relapsing-remitting multiple sclerosis or secondary progressive multiple sclerosis may be more favorable than reported previously. Once a clinical threshold of disability is reached, rate of progression increased.
PMID: 14981177 [PubMed - indexed for MED
The really pertinent point that struck me when I read the original study and which stays with me is how LONG it really takes on average for people to progress to these higher scores.
An edss of 3 seems to be kind of key, it can take years to get there but once you do you kind of drop off at a predictable rate.
But notice that on average for regular RRMS it takes 17 years to reach and EDSS of 3 and 24 years to reach a 6.
Ok now I am going to rant a little bit: I had no progression of lesions and no exacerbations the first 6 years of my MS when I was untreated. I was labeled benign, then went on cop when it came out. I could still jog then. I maintained really good inflammation control on Cop but was diagnosed SPMS last year. I have been using a cane off and on since '05 and full time since '07, so that's an edss of 6...at year 14 for me.
While one person can't be representative of everything or everyone's treatment obviously, it is clear that I progressed really quickly for my disease type in spite of good inflammation control. This is what I keep talking about. I am sort of in shock I guess you'd say, I was expected to do very well, better than the natural history of MS.
But here are some questions for the members here:
How many of you had any idea that natural history of MS was like that? Have you not been led to believe if you don't get treatment you'll be severely disabled in a year or two?
What do you think it means for trials of drugs like Campath that have been following people and their lesion loads for 4 years or somthing?
What do you think this means for the Copaxone 10 year study in which less than half the original people remained on the drug, but of those that did roughly 80% were still stable?
Notice that at 20 years after onset 25% still were a 3 or better.