Pfleger et al. Social consequences of multiple sclerosis. Part 2. Divorce and separation: a historical prospective cohort study. Mult Scler. 2010 Jul;16(7):878-82.
“MS not only causes disability and suffering in the person with the disease; it also has a heavy toll on relationships. Anyone working with MS’ers knows this already from personal experience!”
RESULTS: Five years after onset, the cumulative probability of remaining in the same relationship was 86% in MS’ers vs. 89% in controls. The probabilities continued to deviate, and at 24 years, the probability was 33% in MS’ers vs. 53% in the control persons (p < 0.001). Among MS’ers with young onset (< 36 years of age), those with no children had a higher risk of divorce than those having children less than 7 years (Hazard Ratio 1.51; p < 0.0001), and men had a higher risk of divorce than women (Hazard Ratio 1.33; p < 0.01).
BACKGROUND: There is a need for follow-up studies of the familial situation of MS’ers.
OBJECTIVES: To evaluate the probability of MS’ers to remain in marriage or relationship with the same partner after onset of MS in comparison with the population.
PATIENTS AND METHODS: All 2538 Danes with onset of MS 1980-1989, retrieved from the Danish MS-Registry, and 50,760 matched and randomly drawn control persons were included. Information on family status was retrieved from Statistics Denmark.
RESULTS: Five years after onset, the cumulative probability of remaining in the same relationship was 86% in MS’ers vs. 89% in controls. The probabilities continued to deviate, and at 24 years, the probability was 33% in MS’ers vs. 53% in the control persons (p < 0.001). Among MS’ers with young onset (< 36 years of age), those with no children had a higher risk of divorce than those having children less than 7 years (Hazard Ratio 1.51; p < 0.0001), and men had a higher risk of divorce than women (Hazard Ratio 1.33; p < 0.01).
CONCLUSION: MS significantly affects the probability of remaining in the same relationship compared with the background population.
So (on the basis of recent posts), We loose our jobs, see our relationships break down, get depressed (not surprising really), possibly commit suicide, and if we don't commit suicide we die way before the average (and will probably die alone given the family breakdown).Can anyone tell me why I should bother getting out of bed tomorrow given that my future is already mapped out for me? Can't the researchers do anything to make my future a tiny bit better.Note – I'm no depressed, just sick and tired of MS.
The purpose of the 'bad news' posts is to make you realise that MS is a bad disease and the only way to address these probems is to treat early and aggressively. Once damage has occurred reversing the damage is a hard ask and our current therapies are not up for the task. In addition, the promised neurorestorative therapies are a long way off.
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Re "…and the only way to address these probems is to treat early and aggressively."There is no solid proof of this yet. This is only a conjecture based on a theory under investigation. MS remains a disease of unknown aetiology.I think your point is that prevention is always more effective than intervention, especially in MS where damage is irreversible.
Re: "There is no solid proof of this yet."How long is a piece of string? You could start off by reading the published literature on the efficacy of Alemtuzumab in MS and look at the results of the phase 2 & 3 data. There is also the Canadian bone marrow transplant data. Etc. I don't have time to rehash the arguments in this response. I am convinced. It is all about choice, you can either be an early adopter, or pioneer, and go the induction therapy route and hopefully you will be still running in 15 to 20 years time, or you can be a laggard, or denialist, and have no treatment, or go the safe route with an escalation therapy strategy. The problem with the no treatment or safer route is that you are likely to be in a wheelchair in 20 years time (median time to wheelchair is ~22 years).The rheumatologists have been down this road with rheumatoid arthritis; it is clear those RA'ers who opt for early aggressive treatment don't need joint replacements. At the end of the day it is about perception of the risks and benefits (short-term and potential long-term benefits). If you don't want to take the risks up-front that is fine, but then you can't expect to be in line for reaping the long-term benefits if they emerge. Unfortunately, MS is progressive it doesn't wait for anyone. We know that therapies are more effective the sooner you use them!
For Alemtuzumab, what is the window of opportunity. Is it less than 5 years from onset? Less than 3?
Re: "For Alemtuzumab, what is the window of opportunity. Is it less than 5 years from onset? Less than 3?"The window doesn't close; I think it is beneficial at all stages. What determines its success, or relative success, is the amount of underlying damage that is their prior to starting treatment. The more damage the less chance of recovery and the greater chance of secondary progression. This argument is not alemtuzumab specific; it is the same for all most DMTs. If your house was on fire, how long would you wait before calling in the fire brigade? The one proviso is that you wouldn't call the fire brigade to put out a candle; there is a minority of MS'ers that turn out to have benign disease. The latter is a retrospective diagnosis and very hard, if not impossible, to call in the early stages of the disease.
1. Same question as Devin2. When will induction therapies be available?I heard a talk by a top MS researcher who was quite negative about Alemtuzumab. He described it as nuclear bombing the immune system and killing everything. Audience members who are not in the habit of reading MS news would have gone away thing it is something to avoid
"I heard a talk by a top MS researcher who was quite negative about Alemtuzumab. He described it as nuclear bombing the immune system and killing everything."To an extent that is true, the current therapies affect the good guys as well as the bad guys in the immune system. The goal in the future is to get rid of the bad guys whilst leaving the rest of the immune system unaffected. We can do this in mice but the prospect of being able to do this in MS patients is still some way off. But in the meantime the current therapies seem to be much better than doing nothing, though obviously there are potential downsides.
"How long is a piece of string?"Twice the distance from the middle to one end!
Re: "I heard a talk by a top MS researcher who was quite negative about Alemtuzumab. He described it as nuclear bombing the immune system and killing everything. Audience members who are not in the habit of reading MS news would have gone away thing it is something to avoid."Mitoxantrone is used as an induction therapy and is already available. Some of the results of it being used in this way are very promising. It does however come with risks!Alemtuzumab is about to be assessed by the FDA and EMA; I guess if it gets the green light it will be available in the US by the end of the year or early next year and 6-12 month later in the EU. The US always seems to do things quicker than the EU regarding DMTs.
Re: "something to avoid."You need to speak to MS'ers who have had Alemtuzumab. They are the people who should be counselling fellow MS'ers about the risk:benefits of the treatment; not risk-adverse neurologists who don't have the disease. Did you know neurologists are much more risk adverse than MS'ers?
Re "…efficacy of Alemtuzumab in MS and look at the results of the phase 2 & 3 data."CARE-MS I&II trials lasted 2 years each. 22.2% of patients developed some kind of autoimmune disease. What will happen if you give Alem for 10-15-20 years? No one knows. So, whatever the benefit, it's only evidence, not solid proof.Re "Canadian bone marrow transplant data"I believe you are refering to:"Neurological recovery following treatment of aggressive multiple sclerosis with immunoablation and autologous stem cell transplantation"24 patients from Oct 2001 to Dec 2009. EDSS in [3..6]. One died. No relapses, no MRI activity for anyone. 7 had increase in EDSS. Median follow-up=62 months. Max follow-up=10 years, min follow-up=2 years. Don't you think it's a bit over the edge to consider an average value for such an expansion in time? And then, does anybody know what will happen when 20 years have passed for all patients? Not a single datum. So, only evidence, not solid proof, once again.We have heard many times that greater benefit comes with greater risk. Well, it's the ratio that counts and it seems to remain unchanged. The purpose of a therapy is to restore homeostasis, not to transfigure the disease state. That is, adverse events are also events that should be taken into account for the characterization of the overall health state.Patients always have the last word. But do they get unbiased information?
Alemtuzumab is not given for 15- 20 years. It is generally a short courseone year, followed by a another short course the following year. A third course may be given late if necessary- presumably due to relapse. Testing for autoimmune disease seems to stop 5 years beyond the last course as if it hasn't arisen by then it is most likley not to arise. Alemtuzumab has been given since the 1980's in much higher doses to chronic leukaemia patients. Yes, it has it's risks but I don't think it would be in the reputable scientists' interests who have invested much time in looking into it to muddy the facts. Let's face it, your treatment of choice, VV,is not without risks either and with far less scientific back up.