http://www.mssociety.ca/en/research/med ... -jan06.htm
It seems fairly upbeat in terms of the time taken to hit various disability points. If it really takes 28 years (on average) to need a cane then I have to wonder what I've been worrying about. But many of the pictures on the MS national society websites have pictures of young people in wheelchairs!
But I'd be interested to hear from those who have more contact with others with MS to see if this research rings true. Unfortunately my image of MS is still dominated by Jacqueline du Pre (died at 42), Ronnie Lane of the New Faces (died at 50) and Richard Pryor (died at 65 after years in wheelchair).
You do spend too much time stressing out about MS though. Your time would probably be better spent going about your daily life and ignoring the disease as much as possible since you aren't going to change much now whether you stress about it or not.
Some people seem to use most of their waking hours posting on various groups. This seems very unproductive and depressing to me.
If I read a good book or see a good movie (some sad, but still moving nonetheless) and share the story with another individual, they're likely to hear some of the details, but if they read the book or saw the movie, they are likely to respond with their views as well. I think people are drawn to this site for numerous reasons: information, understanding, communication, support etc...
The disease is depressing, maybe that's why it leads to so much communication. It may all be relative, but that seems productive.
You are 100% right GWA. I miss my old life so much and come on these sites in the hope that some breakthrough will be announced. At my dx in May 2004, the neuro said that the dx was like a bereavement. These words were so true. I'll pop in from time to time but I'm going to try to make the best of what I've got.You do spend too much time stressing out about MS though. Your time would probably be better spent going about your daily life and ignoring the disease as much as possible since you aren't going to change much now whether you stress about it or not.
Many thanks for the good advice.
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While the average time of getting to the use of a cane with your MS may be 28 years, there are a number of factors that could influence that average.
The first one would be as to when the patient was diagnosed with the disease. We know that people can go many years and have such minor symptoms that it could be some 20 years after the first symptom appeared that a diagnosis was confirmed.
Lifestyle and eating habits can also have an effect on MS. People working under constant stress and not eating properly could end up having the disease progress faster than average.
Let's not forget as well that some patients have a very aggressive form of MS and can become wheel-chair bound within only a couple of years.
And of course different medications can have an effect on symptoms as well.
Combine all of these and the average could vary significantly for each patient.....so when it comes to MS and the use of averages, I wouldn't put too much emphasis on that but instead look at each person individually and act accordingly.
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I was Dx. in Jan, 1993. Using a cane by June, 1993.
Received a heavy treatment of steroids in Dec, 1993 then on the monthly pulse. I was able to put the cane away in Jan, 1994. 94, 95 & 96 were great years. On a clinical trial and the occasional steroid treatment. Trial ended then back on the cane in May of 1997. Doctor wanted me to try avonex in June, 1998, felt like crap for 5 months, stopped it in November, 1998. started using a walker, then a scooter in March, 1999. Still in a scooter.
That's my story.
But everyones MS is different and everyone will react and progress differently. So I don't read to much into studies like that they did in Canada.
It is my opinion that this disease is difficult to live with on a daily basis and can become depressing for some people. I believe it is important to keep a positive outlook, as much as possible, and to deal with the issues we face and not dwell on MS every waking moment.
One thing which has helped me is to do something which makes me feel worthwhile. For example, I am a very good seamstress and make all of my clothes and some of my mothers. This allows me to still be productive even though I no longer work and bring home a paycheck.
Cooking is another area in which I excel, so that is a real treat for my husband. At least there are some constructive things in my life that I can share with others and feel good about myself.
Everyone has some area that they are good at and if more focus was put on living and productiveness and less on baring our souls and complaining to others, we would be less stressed and have a better feeling of our own worth.
My own preference in MS groups are the ones like this that focus on research and drugs for the future. Groups that focus on handholding and venting or whining are ones that I avoid.
The main criteria for living with MS is to be able to adapt to it and proceed with living whether one is using two legs to get around or a scooter.
There appears to be a handful of drugs coming out in the next five or ten years that will really help us. Thisisms.com will be one of the first sites to announce the drugs and I watch the posts daily to see if there is something new that I should know about.
Although some may not be as lucky as others as far as MS and progression is concerned, there is nothing wrong with being hopeful regarding the new research paper you all were speaking of. It will of course vary, but you can't live with the assumption that you are going to be the exception to the rule and progress very aggressively (unless of course that is actually happening to you now). You have to think positively.
Just my two cents.
I agree that it is not healthy to dwell 24/7 on MS. However, a lot of the reading, posting and thinking about MS causation is helpful to me emotionally, because the truth is out there somewhere, and decades of medical research has not yet uncovered it. Right now the state of the research is my biggest personal frustration, because I have a gut feeling that much of the research has been focused in the wrong areas, and some very promising areas have not been followed up on. I don't know whether I personally can unearth anything (and I don't entertain big fantasies about it) but it helps me to try, and I learn something every day from other people's posts. I suspect a lot of other people posting here feel the same way. It helps too that poking through medical and scientific literature is part of my day job, and I can bring whatever useful training I have to the MS research arena. Other people may have different ways of coping.
As to the venting and whining (I'm sometimes guilty), that is not the focus of this site, but it helps to be able to do it occasionally! And then move on.
I appreciate your response to my post and your position regarding one's focus. I also appreciate Ian's post concerning disability averages. I can remember one of my greatest fears immediately following my diagnosis was how long until I became completely dysfunctional. I too, questioned the stats, figures, and estimations. Today I am able to keep it in perspective, knowing all too well that research stats are often manipulated depending upon the goal. The doctors were of little help in this regard. The first neuro told me that I would be in a wheelchair within four additional exacerbations. I had another doctor confirm this prognosis after two additional exacerbations by telling me that I would be paralyzed from the neck down based upon his interpretation of my MRI.
This past summer, I took horses to and from the pasture, planted trees and a vegetable garden. I am looking forward to Spring planting this year, but those two additional exacerbations still loom overhead like a dark cloud. I simply felt that responses to Ian's post might be useful to some people who were feeling this overwhelming fear and had not yet come to terms with the uncertaintity of this disease. I felt that if ten people shared their experience or knowledge and just one person, perhaps Ian, gained a little peace of mind or reassurance, then Ian's post was indeed a very productive post.
I also respect your position regarding content; however, I definintely disagree. Some of the posts here get way too technical to keep my interest. I'm not always in the mood to work that hard at comprehending the info. Sometimes I would rather hear the personal stories, the triumphs and the tribulations others face. It is not my intention or my goal to dominate or control the content of the site. I simply skim over the stuff I am not interested in.
Maybe Ian needed to hear that he should get on with living. Maybe he was too focused on the aspects of MS. If your repsonse helped him get on with life, then his post and your response were extremely productive. I was concerned that your response might shut down the thread/responses and that there are people out there who would benefit from the responses. Perhaps a few people out there are overwhelmed by their fear and need to hear the responses in order to move on with their acceptance and be more productive.
In any case, I hope you'll continue to post and share your experiences with us. I think many people will find the productive aspects of your life inspirational.
Mayo Clinic in Rochester
Thursday, January 22, 2004
Multiple Sclerosis Not as Progressive or Disabling as Once Thought
ROCHESTER, Minn. -- In the most comprehensive study of how multiple sclerosis (MS) symptoms change over time, Mayo Clinic researchers have found that less than half of patients studied developed worsening disability within 10 years. Their report appears in the current edition of the journal Neurology [Pittock SJ et al. (2004). Neurology 62:51-59].
Knowing how the symptoms of MS change over time provides good news for patients newly diagnosed with MS, who may feel the disease leads to inevitable and uniform decline in physical functioning. It also offers vital information for public health planners charged with meeting future needs of MS patients.
In their study, the Mayo Clinic researchers provide encouraging evidence that for many patients the disability from MS remains mild -- so much so that of 99 patients who were walking unassisted when examined in 1991, 71 retained that ability in 2001. And only about 20 percent of patients who did not require a wheelchair in 1991 needed one 10 years later.
“The fact that most MS patients don’t get progressively worse over 10 years is the really great news,” says Moses Rodriguez, M.D., the neurologist who led the Mayo Clinic research team.
Survival was slightly reduced compared with the general U.S. population, however, and 30 percent of patients progressed to a more disabling MS state -- such as needing a cane or a wheelchair -- over the 10-year follow-up period.
The finding that most MS is not as progressively disabling as once thought is counter to the common perception of MS as a disease marked by a steady decline in motor function. These new results are extremely encouraging to the Mayo Clinic researchers, who treat patients in addition to conducting research.
Adds Sean Pittock, M.D., another member of the Mayo Clinic research team: “Natural history studies like this one can provide a long-term benchmark against which outcomes of treatment and placebo groups can be compared, and in addition can help in counseling patients because it can help them envision a likely future.”
Significance of the Mayo Clinic Research
The Mayo Clinic research is the first comprehensive and scientifically rigorous natural history of MS to document how the disease changes over 10 years’ time. It is important because:
1. Mayo Clinic’s unique database of MS patients provides context. Several generations of Mayo Clinic scientists have been systematically studying MS since 1905. While other researchers have performed large-population studies -- notably in London, Ontario, Canada; in Iceland; and in Northern Ireland -- Mayo Clinic’s computerized, centralized diagnostic index and excellent record keeping enable researchers to ascertain the status of nearly 100 percent of the MS patients they’ve studied.
2. In terms of scientific depth and statistical power, it will likely not be repeated. Mayo Clinic doctors tested, interviewed and conducted physical exams from all MS patients studied, a total of 162 living in Olmsted County in 1991. Olmsted is the southeastern Minnesota county in which Mayo Clinic is located. Researchers visited the patients at home or in the nursing home if necessary.
Ten years later, research team members returned to the field to find the same patients -- and found all but one of them. They administered the same battery of tests to document change over time of increasingly severe MS symptoms. These ranged from moderate gait impairment, to the need to use a cane or a wheelchair to get around.
“This astounding continuity of patient base gives the Mayo Clinic study a statistical power rarely seen in studies of living patients, and not likely to be equaled in subsequent efforts,” says Dr. Rodriguez.
Multiple Sclerosis at a Glance
MS is a disease of the central nervous system that affects an estimated 200,000 Americans. Neither the cause nor the cure of MS is known. MS is characterized by a pattern of attack and remission of a variety of symptoms. These include numbness or weakness in one or more limbs; uncoordinated or unsteady gait and blurred vision or problems with eye movements. Nerve fibers malfunction to produce MS symptoms when the protective sheath around them is damaged. Researchers suspect the damage may be caused by a virus or by environmental pathogens.
No one knows why, but women are slightly more likely to get MS than men, and northern states’ populations face greater risk than southern states’ populations. A November 2003 study published in Neurology by the same Mayo Clinic research team upholds this geographic association.
Neurology. 2006 Jan 24;66(2):172-7. Related Articles, Links
Disability progression in multiple sclerosis is slower than previously reported.
Tremlett H, Paty D, Devonshire V.
Department of Medicine (Neurology), University of British Columbia, Vancouver, Canada. email@example.com
OBJECTIVE: To investigate disease progression and risk factors in a large geographically based population with multiple sclerosis (MS), using two different inception points--clinical onset and date of birth. METHODS: The authors reviewed a database of subjects with definite MS and symptom onset prior to July 1988. The main outcome was sustained progression to Expanded Disability Status Scale (EDSS) 6 (requires a cane), using the date of birth and date of MS onset as inception points in separate analyses. Risk factors examined were sex, relapsing vs primary progressive course, onset age, and onset symptoms. RESULTS: The study included 2,837 patients, followed prospectively for 22,723 patient years. The median time to EDSS 6 was 27.9 years, 15 years after onset; only 21% reached EDSS 6, and by age 50, 28% required a cane. Men progressed 38% more quickly than women from onset (p < 0.0005), yet both required canes at similar ages: 58.8 years for men and 60.1 for women (p = 0.082). A younger onset age predicted a slower progression, but those older at onset were consistently older when reaching EDSS 6. A primary progressive course predicted a more rapid progression from both onset (p < 0.0005) and birth (hazard ratio = 2.7 [95% CI: 2.2 to 3.3]). No onset symptom consistently predicted progression. CONCLUSION: Disability progression in multiple sclerosis (MS) accrued more slowly than found in earlier longitudinal studies. The authors also challenged two fundamental concepts in MS, demonstrating that neither male sex nor older onset age was associated with worse disease outcome.
PMID: 16434648 [PubMed - in process]
One of the questions I have about these newer studies, and future progression studies, is the impact of increased diagnosis, primarily due to use of MRI, and whether this will add more potentially milder cases of MS to the overall mix of people diagnosed with MS and thus reduce the progression rate of the overall MS population.. I notice in this study they say "symptom onset" prior to 1988, I assume it is both symptom onset AND diagnosis prior to 1988 but am not sure. I was just diagnosed in 2004, but can attribute possible MS symptoms at least back to the early 80s. Have I had MS for over 20 years already? Maybe. I currently test out normal on the neuro exam. If not for the MRI, I would not have been diagnosed with MS at all. So thirty years ago someone like me would not even be counted as having MS in a study like this.
I think your questions regarding increased diagnosis would have a significant impact on the research findings. In addition, another significant factor would be how disabled the patient feels, not just what is observed by a supposedly objective researcher. Some days I can walk quite a distance, some days ten feet is too far. My guess is that for research purposes, my status would reflect the more positive day or time of day.
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