Does anyone have a sense on accurate MS progression statistics?
Right, I understand that MS is unpredictable and no one can predict the course of your disease blah blah blah. But it also seems like there are totally clashing sets of information (and unscientifically, personal experiences) and it's hard to know what's real.
There are blurbs on the NMSS page that approximately 2/3rds of pwMS will remain able to walk, although possibly with a cane or walker. It also states that pwMS generally have the same life-expectancy. But the statistics from the Public Health Department states that 20% of pwMS will not live to 20 years after diagnosis. And certainly a number of those patients living 20 years after the diagnosis will be severely disabled. So between the 20% that do not live and the many others who are living but unable to walk how can it possibly be accurate that 2/3rds of pwMS are never in a wheelchair (or worse)? And if the average age of diagnosis is somewhere between 20 years old and 40 years old and 20% of patients are not alive 20 years after diagnosis how on Earth could pwMS have an average or near average life expectancy? And unfortunately I think many of us on the Internet who are aware of other people's stories would have a hard time believing the more optimistic statistics. So what's real?
Having trouble finding "the truth" about MS statistics
Re: Having trouble finding "the truth" about MS statistics
Another conundrum... How can there only be 400,000 people with MS in the US? This number has been cited for the last 15 or 20 years. People are being diagnosed faster than they're dieing off.
The only reason for this number to still be floating around after all of these years is that it gives special privileged status to the pharmas producing drugs for MS, i.e., orphan drug status.
The only reason for this number to still be floating around after all of these years is that it gives special privileged status to the pharmas producing drugs for MS, i.e., orphan drug status.
Re: Having trouble finding "the truth" about MS statistics
Well, I'm real. I was diagnosed over 20 years ago, became unwell, became well, recently got sick and more recently started getting better.
If I was you, I would forget the term MS and all its varieties. Instead I would look at my current symptoms and deal with them one at a time. Treat the "statistics" as unsubstantiated marketing drivel. Only take your reference points from quality peer reviewed journals and even then be sure you really knew what they meant.
MS is not a reportable disease. I wish it was. Then we might learn something.
Having the medical profession pontificate about pet theories, when what we want is evidence based reports, doesn't help.
The reality is there are probably more success stories about long and fruitful lives that go unreported than we imagine.
Don't map out a timetable for decline. Look at your current status and plan to improve it.
Regards,
If I was you, I would forget the term MS and all its varieties. Instead I would look at my current symptoms and deal with them one at a time. Treat the "statistics" as unsubstantiated marketing drivel. Only take your reference points from quality peer reviewed journals and even then be sure you really knew what they meant.
MS is not a reportable disease. I wish it was. Then we might learn something.
Having the medical profession pontificate about pet theories, when what we want is evidence based reports, doesn't help.
The reality is there are probably more success stories about long and fruitful lives that go unreported than we imagine.
Don't map out a timetable for decline. Look at your current status and plan to improve it.
Regards,
Re: Having trouble finding "the truth" about MS statistics
This was published recently, it might answer some of your questions, although it doesn't account for any impact that meds may have.
http://www.ncbi.nlm.nih.gov/pubmed/25712541
J Neurol. 2015 Feb 26. [Epub ahead of print]
The outcome spectrum of multiple sclerosis: disability, mortality, and a cluster of predictors from onset.
Tedeholm H1, Skoog B, Lisovskaja V, Runmarker B, Nerman O, Andersen O.
Abstract
Interest in the long-term natural history of multiple sclerosis (MS) is being revived, as disability endpoints become increasingly important with the advent of highly efficacious long range but potentially harmful drugs. MS had an increasingly benign course, probably due to better assessment and changing diagnostic criteria. Incidence cohorts reduce inclusion bias, capturing both extreme benign and severe cases.
We conducted a 50-year follow-up of an incidence cohort of Gothenburg residents with MS onset in 1950-1964 (n = 254; 212 with an initial relapsing-remitting course and 42 with a monophasic course, diagnostic criteria according to Poser).
Patients were followed longitudinally until censoring, death, or study termination in 2012 and evaluated using Kaplan-Meier estimates and Cox regression analysis. Median time to secondary progression was 15 years. Median time to EDSS6 and EDSS7 was 26 and 48 years (n = 254), respectively.
The cumulative risk of reaching EDSS6 was 50 % at 55 years of age and 80 % at 80 years of age (n = 212). A score based on a cluster of clinical features at onset predicted secondary progression, EDSS6, EDSS7, and EDSS10 (hazard ratio 1.6-2.3 per score unit for women, 0.99-1.49 for men). This score predicted the disease course during five decades indirectly, by predicting time to secondary progression. Age at onset predicted the course in men, with 3-6 % yearly increase in the risk of reaching disability milestones. The present incidence cohort provided hard outcome data in untreated patients over several decades.
PMID: 25712541 [PubMed - as supplied by publisher]
http://www.ncbi.nlm.nih.gov/pubmed/25712541
J Neurol. 2015 Feb 26. [Epub ahead of print]
The outcome spectrum of multiple sclerosis: disability, mortality, and a cluster of predictors from onset.
Tedeholm H1, Skoog B, Lisovskaja V, Runmarker B, Nerman O, Andersen O.
Abstract
Interest in the long-term natural history of multiple sclerosis (MS) is being revived, as disability endpoints become increasingly important with the advent of highly efficacious long range but potentially harmful drugs. MS had an increasingly benign course, probably due to better assessment and changing diagnostic criteria. Incidence cohorts reduce inclusion bias, capturing both extreme benign and severe cases.
We conducted a 50-year follow-up of an incidence cohort of Gothenburg residents with MS onset in 1950-1964 (n = 254; 212 with an initial relapsing-remitting course and 42 with a monophasic course, diagnostic criteria according to Poser).
Patients were followed longitudinally until censoring, death, or study termination in 2012 and evaluated using Kaplan-Meier estimates and Cox regression analysis. Median time to secondary progression was 15 years. Median time to EDSS6 and EDSS7 was 26 and 48 years (n = 254), respectively.
The cumulative risk of reaching EDSS6 was 50 % at 55 years of age and 80 % at 80 years of age (n = 212). A score based on a cluster of clinical features at onset predicted secondary progression, EDSS6, EDSS7, and EDSS10 (hazard ratio 1.6-2.3 per score unit for women, 0.99-1.49 for men). This score predicted the disease course during five decades indirectly, by predicting time to secondary progression. Age at onset predicted the course in men, with 3-6 % yearly increase in the risk of reaching disability milestones. The present incidence cohort provided hard outcome data in untreated patients over several decades.
PMID: 25712541 [PubMed - as supplied by publisher]
Re: Having trouble finding "the truth" about MS statistics
Here is a study reviewing original meds on MS progression to SPMS:
http://www.ncbi.nlm.nih.gov/pubmed/23124789
Mult Scl
Epub 2012 Nov 1.
Time to secondary progression in patients with multiple sclerosis who were treated with first generation immunomodulating drugs.
Tedeholm H1, Lycke J, Skoog B, Lisovskaja V, Hillert J, Dahle C, Fagius J, Fredrikson S, Landtblom AM, Malmeström C, Martin C, Piehl F, Runmarker B, Stawiarz L, Vrethem M, Nerman O, Andersen
Abstract
BACKGROUND:
It is currently unknown whether early immunomodulatory treatment in relapsing-remitting MS (RRMS) can delay the transition to secondary progression (SP).
OBJECTIVE:
To compare the time interval from onset to SP in patients with RRMS between a contemporary cohort, treated with first generation disease modifying drugs (DMDs), and a historical control cohort.
METHODS:
We included a cohort of contemporary RRMS patients treated with DMDs, obtained from the Swedish National MS Registry (disease onset between 1995-2004, n = 730) and a historical population-based incidence cohort (onset 1950-64, n = 186). We retrospectively analyzed the difference in time to SP, termed the "period effect" within a 12-year survival analysis, using Kaplan-Meier and Cox regression analysis.
RESULTS:
We found that the "period" affected the entire severity spectrum. After adjusting for onset features, which were weaker in the contemporary material, as well as the therapy initiation time, the DMD-treated patients still exhibited a longer time to SP than the controls (hazard ratios: men, 0.32; women, 0.53).
CONCLUSION:
Our results showed there was a longer time to SP in the contemporary subjects given DMD. Our analyses suggested that this effect was not solely driven by the inclusion of benign cases, and it was at least partly due to the long-term immunomodulating therapy given.
KEYWORDS:
Disease-modifying drugs; Sweden; disease progression; disease severity; epidemiology; multiple sclerosis; relapsing–remitting multiple sclerosis; secondary progressive multiple sclerosis; time to progression
Comment in
Observational studies of treatment effectiveness: useful, useless or somewhere in between? [Mult Scler. 2013]
PMID: 23124789 [PubMed - in process]
PMCID: PMC3652599
http://www.ncbi.nlm.nih.gov/pubmed/23124789
Mult Scl
Epub 2012 Nov 1.
Time to secondary progression in patients with multiple sclerosis who were treated with first generation immunomodulating drugs.
Tedeholm H1, Lycke J, Skoog B, Lisovskaja V, Hillert J, Dahle C, Fagius J, Fredrikson S, Landtblom AM, Malmeström C, Martin C, Piehl F, Runmarker B, Stawiarz L, Vrethem M, Nerman O, Andersen
Abstract
BACKGROUND:
It is currently unknown whether early immunomodulatory treatment in relapsing-remitting MS (RRMS) can delay the transition to secondary progression (SP).
OBJECTIVE:
To compare the time interval from onset to SP in patients with RRMS between a contemporary cohort, treated with first generation disease modifying drugs (DMDs), and a historical control cohort.
METHODS:
We included a cohort of contemporary RRMS patients treated with DMDs, obtained from the Swedish National MS Registry (disease onset between 1995-2004, n = 730) and a historical population-based incidence cohort (onset 1950-64, n = 186). We retrospectively analyzed the difference in time to SP, termed the "period effect" within a 12-year survival analysis, using Kaplan-Meier and Cox regression analysis.
RESULTS:
We found that the "period" affected the entire severity spectrum. After adjusting for onset features, which were weaker in the contemporary material, as well as the therapy initiation time, the DMD-treated patients still exhibited a longer time to SP than the controls (hazard ratios: men, 0.32; women, 0.53).
CONCLUSION:
Our results showed there was a longer time to SP in the contemporary subjects given DMD. Our analyses suggested that this effect was not solely driven by the inclusion of benign cases, and it was at least partly due to the long-term immunomodulating therapy given.
KEYWORDS:
Disease-modifying drugs; Sweden; disease progression; disease severity; epidemiology; multiple sclerosis; relapsing–remitting multiple sclerosis; secondary progressive multiple sclerosis; time to progression
Comment in
Observational studies of treatment effectiveness: useful, useless or somewhere in between? [Mult Scler. 2013]
PMID: 23124789 [PubMed - in process]
PMCID: PMC3652599