Society’s perception of MS: how bad is it?

In response to your comments about the prognosis and severity of MS. There is no doubt in my mind that MS is a disabling disease and leads to disability in the majority of subjects given sufficient time. However, this statement refers to the prognosis from natural history studies done in the the pre-DMT era. I believe that in the current era with aggressive treatment early on the prognosis has improved. 
The following figure demonstrates UK Society’s perspective on the disease. On the y-axis is utility an index of quality of health used by health economists; 1 is perfect quality of health and 0 is death. Your utility on the day you are born is 1 and gradually drops to 0 when you die. A value less than 0 is considered a quality of life worse than death. It is alarming that in the UK a PwMS with an EDSS of 8.0 or 9.0 (weakness in all 4 limbs and/or bed-bound) is considered to have a quality of life worse than death. I am told that no other chronic disease scores this low. Alarming?

“I use this figure as the backbone of my argument to support early aggressive treatment. How can we not treat this disease aggressively? Despite the poor Societal perspective of MS, MS does not fulfill contemporary criteria for being a terminal illness. Would you agree? If not we can continue the debate.”

13 thoughts on “Society’s perception of MS: how bad is it?”

  1. Advanced MS is worse than any terminal disease. The first time I googled the symptoms & realised that the cause was either MS or a brain tumour, one of my thoughts was that wiht a tumour at least there was a possibility of removing it and getting rid of the disease.

  2. Hi Prof G, When you refer to early aggressive treatment, what type of treatment are we talking about? Do you see a future where newly-diagnosed patients are given access to what are currently second-line medications, such as Tysabri and possibly Campath etc.?

  3. "Advanced MS is worse than any terminal disease."Couldn't agree more. if it wasn't terminal why would they call it "late-stage" or "end-stage MS"?By this stage Neuros aren't involved. The MS nurses see the worst of this disease. At this stage you'd want to be dead.

  4. I was at the gym a few weeks ago and an old Asian man came up to me and asked me why I was walking funny. Before I could get annoyed at his tactless question he asked me if I have MS. I told him I did; I said that I had ppms. He told me he could tell because his son had the disease and died at 35 years of age because of complications caused by the disease. This got me sort of concerned because I will be that age in 3 years time and my mind went into overdrive thinking that his late son’s fate might be my own destiny.I’d settle for any kind of treatment right now because the doctors are giving me nothing, probably because there is nothing they can give me. The thought that medical science is so impotent at treating progressive MS is hugely unsettling.Prof G, here’s what you should do: I say that you treat the disease aggressively. I say that you should cultivate the patient’s bone marrow stem cells and transplant them in their CNS. I say please do something other than deliberating issues and let’s help people like ourselves live productive lives again. I have read a lot of comments from other sufferers my age on your blog and they all seem to indicate many them have put their lives on hold. Their peers are moving along with careers, relationships and starting families; while those with MS are trying to anticipate just how bad their condition will get. That’s not a good state of mind to be in.It’s evident that you care about MS Prof G. I follow you on Twitter and have read Tweets about how miserable it makes you feel seeing young folks with rampantly progressive disabilities caused by MS. I’m happy that such realities affect you so profoundly and I can only hope that my seemingly useless consultant neurologists are as equally bummed out as what you are when they see a young handsome guy like me struggling to walk, stumbling into their clinic like a zombie out of ‘Night of the Living Dead’.All of us with progressive MS are someone’s partner; child or parent – it must be so hard on those around us to see us getting worse and watching our doctors do nothing for us other than collecting their big paychecks. Because I was a former bodybuilder, I think my neurologists look at me and think I look great and that other than walking issues I’m fine, but that ain’t the case. I don’t feel well at all but that doesn’t always show on the outside.In my mind I think that if scientists really wanted to stop progression, or even cure MS, then they probably can. Remyelination is not hocus-pocus anymore, there’s enough out there to suggest it’s really possible. I’ve read stuff by Professor Franklin who seems to think he’s almost cracked the secret to remyelinating nerves, whereas you can’t even bring yourself to even think that we can seriously slow down neuro-degeneration in MS within the next 5 years.Listen Prof G, I have faith in all things you’re working on, as does everyone following your blog. I hope that you also have faith in your efforts because sometimes that does not come across clearly.

  5. Re The Multiple Sclerosis World’s Arnold SchwarzeneggerI was a a serious skateboarder before developing MS. I can't do it now and that does bum me out a lot.When I was diagnosed they told my mom and me that MS won't kill me and that I'll live as long as anyone. Reading some of the things on this site maybe MS is a deadly disease. I think many of us feel MS badly effects or quality of life becuase it messes us up when we're young. We're not like old dudes who can see the bright side of things even when they are ill. It's better not to think about it too much. Peace.

  6. It does kill some – they call it malignant MS.For some others it kills you without killing you. What I mean is that it robs you of the things that make us human – walk, work etc.Prof G went skiing this year and then did a marathon – normal things for persons. Pretty much impossible for those who've had this disease for some time.What is life? We will all have our own definition. I'll say goodbye to this life when all I do is exist – reliant or others. So the death certificate will read suicide, but it was the MS that made life so unbearable that death was preferable. Stopping progression should be the key focus of research. If they could say you are EDSS 4.5 and will never get worse, suddenly I have a life and can plan – I can work round my disabilities. At the moment is "can't help you" so I can't plan and think of a future where I am much worse. Agree with the earlier poster – at least a tumour would have given you a chance. I'd happily exchange for any cnacer.

    1. Hearing what you said, "So the death certificate will read suicide, but it was the MS that made life so unbearable that death was preferable," alarms me. You also said "reliant on others," so I am thinking you have others. Please do not do anything horrible to those others, if not for yourself. I am newly "diagnosed" (still pending final diagnosis) and apparently just went through an acute flare-up, from which I am mostly unrecovered. I am most scared of not being able to care for myself one day. But physically or even cognitively disabled, I'll bet you mean more to others, and take care of them too in more ways than you think. Please hang in there and take care of yourself — and be optimistic!Best,M

  7. The dilemma that I would struggle with in terms of having aggressive therapy is the potentially worse side effects compared with DMDs, like interferons, when my quality of life is pretty good right now. I have RRMS and albeit a few adjustments, live my life pretty much the same as pre-diagnosis and take interferons. However, it's always at the back of my mind that the disease will more than likely progress. If the disease could be hit harder from the start, would I opt for a therapy where the side effects could be potentially worse and I may not be able to do the things I'm still able to do right now? I don't know.Maybe if we had a way of predicting disease progression it would make these decisions a bit easier to make. On one hand I think live for today and on the other I'm scared of what the future holds and whether I'm giving myself the best chance to stay relapse-free in the future.

  8. The response to this post had been very touching. What is clear is that not all treatment strategies will be appropriate for everyone. Some PwMS will be risk averse and take the safe option first, whilst others will be prepared to take risks up front for maximal long-term benefit. This is why clinical medicine and neurology is still an art and not a science. I am very hopeful of having a treatment for progressive MS; I am just not prepared to sell the unrealistic expectation of restoring lost function when we don't have any evidence of being able to do this in people with established progressive MS. The confirmed or sustained improvements we see in people treated with highly effective treatments (alemtuzumab & natalizumab) is probably due to natural repair mechanisms kicking in rather a direct result of the drugs.

  9. Re "early aggressive treatment, what type of treatment are we talking about? Do you see a future where newly-diagnosed patients are given access to what are currently second-line medications, such as Tysabri and possibly Campath etc.?"Spot on; I hope will be in a position to offer patients Natalizumab or Alemtuzumab as first-line therapies. I have covered the issue of induction vs. maintenance/escalation strategies in a previous posting, which may be of interest to you.

  10. RE "Maybe if we had a way of predicting disease progression it would make these decisions a bit easier to make." This is one of the reasons for monitoring the disease with serial MRIs and lumbar punctures. The information from these tests helps us predict who will have a worse prognosis and to assess response to treatment.

  11. "This is one of the reasons for monitoring the disease with serial MRIs and lumbar punctures"I totally agree, especially because is it not only through MRIs that asymptomatic disease activity can be picked up? Is there any work being done to make it standard practice for MS patients to be offered serial MRIs and/or LPs as a way of monitoring disease progression on the NHS?

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