Research: Spasticity; neuros need to listen


Purpose: Multiple sclerosis (MS) is the most common disabling neurological condition affecting young adults. One third of people on an American registry of people with MS (PWMS) reported having activities affected by spasticity. The psychosocial effects of spasticity in people with MS have been shown to be distressing and detrimental to emotional and social relationships when investigated from a psychology perspective. This paper investigates the impact of spasticity on the lives of people living with MS from a physiotherapeutic perspective. 

Method: This study involved 12 semi-structured interviews with individuals experiencing MS-related spasticity. Ten sets of data were analyzed following framework analysis principles. 

Results: Results suggest spasticity effects life experience of these PWMS in diverse and complex ways. Physical, psychological and social consequences of spasticity are closely linked and can be far reaching. 

Conclusions: Therapists need to be aware of links between specific physical symptoms and their psychosocial consequences if they want to improve peoples’ quality of life. This paper provides in depth qualitative research evidence for the complexity of the spasticity experience for each individual, strengthening the argument for a patient-centred approach to treatment. These results also support the case for targeted interventions with effectiveness recorded in a patient-centred way.

For many years spasticity has been assessed by the neuro, nurse or physiotherapist and looks at different muscle groups and scores whether they were stiff or not, using something called the Ashworth Scale (See Above). Could have been called the jobsworth scale, because it is very unresponsive to therapy and so in trials looking at the effects of medical cannabis, it was found that there was little evidence for change. Therefore the neuro had to tour round the talks circuit telling us why it did not work. However, had they listened to the MSers they said it worked. Now in this paper the Neuros are listening and have devised a new way to look at MS. As a consequence sativex became a licensed drug and because they based their efficacy results on what Msers said and not what Neuros thought. This study says just that Neuros need to listen to MSers. 

CoI: Prof B has developed a drug to treat spasticity and is trying to develop it for the use in MSers 

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  • Let's hope that the powers that be listen to MSers then, and don't just use the feedback from neuros, useful as that may be.

  • An underlooked contributor to a good quality of life is good quality sleep. That is what Sativex has delivered for me (not being woken through the night by pain from spastic muscles) and enabled me to carry on working.

  • Agreed that doctors and researchers need to listen to the experiences expressed by MSer's, but why then does this blog not give any weight to the positives testified to by some patients who have undergone CCSVI angioplasty?

    Just to be clear, I have a healthy skepticism in regards to CCSVI, and as the writer of a very popular MS blog, I've received many emails from people who have undergone the CCSVI treatment procedure, the majority of them reporting minimal, if any, benefits. Still, there are substantial numbers that report real gains, which I find hard to simply disregard. The power of placebo? Maybe, but I should think such reports would at least arouse the curiosity of doctors devoted to relieving the suffering of people with MS.

    • Re: "Maybe, but I should think such reports would at least arouse the curiosity of doctors devoted to relieving the suffering of people with MS."

      It has which is why clinical trials are underway! Most clinicians want class 1 or 2 evidence; this is from randomised, controlled, double or single blind studies. Yes, the placebo effect could explain it all. In most symptomatic studies upward of 30% of subjects experience an improvement. There is also the nocebo effect; this is perceived deterioration when a placebo is withdrawn.

    • Thanks for the reply. I find this blog to be of immeasurable value, and much appreciate the work that goes into putting it together. That said, I do find myself surprised at the derisive tone these pages often take when discussing CCSVI related matters.

      Dr. Zamboni's hypothesis, or perhaps the reaction of the patient population to it, seems to bring out the fangs of mainstream MS neurologists, to a degree that I find hard to understand. If anything, the enthusiasm with which CCSVI has been embraced by many MS patients (albeit with very little robust scientific evidence to back it up) speaks to the dissatisfaction that same population feels with the current state of MS research and treatment.

      The autoimmune theory has thus far offered up precious little in the way of hope for a cure, and even the latest and greatest DMD's appear to be no more than sophisticated symptom managers. Certainly, for some patients they dramatically improve quality of life (at a long-term cost that has yet to be determined), but there is scant evidence that any of them impact the ultimate progression of the disease. And for those of us with progressive disease, modern medicine offers us… Nothing. It sometimes seems that the autoimmune theory has benefited the pharmaceutical companies more than those suffering from MS.

      Is it any wonder then that a relatively simple theory that carries with it the tantalizing promise of tangible benefit should explode in the mass consciousness of a desperate patient population? At the very least, the theory has prompted investigations into the systemic manifestations of MS, and may provide some potentially very important insights, even if CCSVI itself is eventually proven to be a complete nonfactor.

      Thanks again for putting together this blog, and for taking the time to respond to my comments…

    • Have you considered the possibility that Zamboni is a fraud? There is a consensus of opinion emerging that this is the case. It may only be a matter of time before his University investigates whether or not his research is above board. If only to protect themselves from a class action lawsuit.

    • Re "..The autoimmune theory has thus far offered up precious little in the way of hope for a cure, and even the latest and greatest DMD's appear to be no more than sophisticated symptom managers…"

      Are you sure about this? The more potent induction therapies may cure some people. We need to wait to find out! I am not sure we are ready to dismiss the autoimmune theory just yet. In addition, how do you explain the effectiveness of anti-trafficking therapies in MS? They work by blocking lymphocyte migration. This is a very compelling argument in favour of autoimmunity. We need to wait and see what happens.

      Re: "CCSVI"

      I am so negative about the subject is because the science is so bad including the thinking about the science. The CCSVI lobby ignore causation theory and the wealth of contemporary knowledge we have about MS. CCSVI is simply incongruent with current knowledge and nothing I have seen yet convinces to the contrary. I consider myself a lateral thinker and I am ready for a paradigm shift in the field, but I will be surprised if it is CCSVI. The paradigm shift is more likely to come from The Charcot Project!

    • Prof G, in case you havent read the Wheelchair Kamikaze blog please do so when you get the time. Marc writes beautifully

    • Thanks for the kind words about my blog, much appreciated.

      Just to be clear, I am neither condemning the autoimmune theory nor endorsing the CCSVI hypothesis. That the immune system plays some role in the MS disease process is beyond dispute, but the aberrant immune response must be a reaction to some yet unknown catalyst. It's very frustrating, from a patient perspective, to see the vast majority of MS research outside of academia being directed towards ways of modifying or suppressing the aberrant MS immune response, rather than discovering what is causing it.

      I suppose we won't know whether the latest and greatest immune suppressors completely curtail disease activity for quite a few years, but given the potentially disastrous side effects inherent in long-term immune suppression, we certainly can't be satisfied with the status quo (not to suggest that you are).

      In regards to CCSVI, I agree that the most strident CCSVI supporters do excel at cherry picking their information, and are probably guilty of some willfully ignorance regarding established MS fact. However, I can empathize with them to a significant extent because of the myriad frustrations involved with being attacked by a disease that still defies explanation despite generating billions in profits for the industry that has grown up around it. And, as I mentioned previously, as someone dealing with the ravages of progressive neurodegeneration, for which there has thus far not even been a pharmaceutical Band-Aid, the appeal of a whole new way of thinking is quite attractive. Any port in a storm, as they say.

      Even if the current CCSVI studies reveal the hypothesis to be rubbish, they very well may turn up some important clues about the disease nevertheless. We must be careful not to throw the baby out with the bathwater, if indeed the bathwater turns out to be as cleansing as Labrador drool.

      Again, thanks for your response.

    • Some of the newer immune suppressors aren't looking at long term suppression of the immune system, rather at re booting it eg alemtuzumab.

  • I was reading the CCVI thread at TIMS yesterday and came across this thread

    I was pretty horrified to read that one man has had venoplasty 10 times! People are having vein grafts due to the damage caused by repeated ballooning and non-functioning stents and yet, no one seems to have regrets. This seems very strange. Why aren't those who have wasted their money on an expensive procedure(s) not suing? This is the US – the litigation capital of the world.
    Yet- there is one poster Harry Z, who never fails to post the latest statistics on the awfulness of Tysabri. No wonder there is little discourse or decent discussion any more. The site is taken over by proponents of CCSVI, shills for various clinics and naysayers who don't have MS and who should really have walked away from the MS world ages ago. Harry Z's wife died ten years ago. It was a tragedy, as all MS-related deaths are, but people like him are driving newbies away.
    As for this site why bother to discuss treatments when people like VV and Dr Dre swear that nothing works. Anyone who replies is ignored and even the docs don't regard the DMDs with a positive view. I've been on a DMD for many years and it has stopped relapses. This is really, really important to me.
    Sorry, I went off topic. Spasticity has chewed up my knees. I persisted with fitness training, despite the pain that this has caused. I can't kneel or run – all due to spasticity.
    I did enquire about Baclofen, but it has a side-effect of causing muscle weakness. This could mean falls and injuries to me, so I don't take it. I wish there was a better drug to help though.

    • Good comments about CCSVI. We are greatly concerned that MSers are being tempted to try this before it has been properly validated. We know many are desperate but to me, "Liberation therapy" has all the hallmarks of the unlicensed stem cell quack clinics of a few years back. We have a more positive view on DMDs than you think, we just think they're not the only answer to stopping progression.

      We're working on better treatments for spasticity. In the meantime many MSers I have spoken to have had positive experiences with Sativex with none of the negatives associated with Baclofen. Might be worth a try or as you seem to be from the US, medical marijuana?

    • In my opinion this is the worse aspect of private medicine it allows Doctors(crooks) to profiteer on the problems of others. This allows some to pander to Quack medicine. Maybe some will say they are forethinking. However it seems like plastic surgery, once you start you just can't stop.

      If angioplasty turns out to work then I will be very happy and
      try and work out the reasons, as I still have problems with the logic.
      But if it turns out to be fad, it is about time the medical profession took action and get these guys struck-off as they are parasites. The EU needs to get some backbone and not allow medical tourism for unapproved therapies.

      What concerns me these people often offer one fad treatment with another fad treatment that is completely unrelated in terms of expertise and science, except the expertise of levering cash from people. If their are consequences to avoiding due process some people may think twice.

    • "What concerns me these people often offer one fad treatment with another fad treatment that is completely unrelated in terms of expertise and science"

      I'll agree with you on that one, MD. Offering CCSVI treatment along with Stem cell treatment makes no sense on scientific grounds. Those who deeply understand what CCSVI is all about don't bother with anything else.

      "They work by blocking lymphocyte migration. This is a very compelling argument in favour of autoimmunity."

      Prof GG, it all ends up in relieving inflammation (swelling) inside a closed compartment as the scull and the vertebral column. MS would be a whole different disease if the CNS was not surrounded by bones. Don't you agree?

    • Have you heard of Guillain Barre Syndrome, which is a demyelinating disease of the peripheral nervous system. Any thoughts on the problems of this disease as there is no bone insight

    • MD, GBS is acute, fast progressive and ends up with death, disability or total recovery. It's not even chronic. Why bring it up in a discussion about MS?

      The Relapsing/Remitting character of most MS cases is one of the most characteristic aspects of MS that no autoimmune or viral theory is even close to providing an explanatory mechanism. In contrast, the explanation is inherent in CCSVI as transient micro-injuries caused by inverted blood flow within compartmentalised CNS tissue. From this point of view, Dawson's fingers are a strictly logical consequence. And correct me if i am wrong, you have a BIG problem explaining them.

    • Know what? We really can't be bothered any more. The evidence against your pet theory grows by the week. Yet you will never be convinced. I mean, really, what's the point?

    • "In contrast, the explanation is inherent in CCSVI as transient micro-injuries caused by inverted blood flow within compartmentalised CNS tissue."

      Oh my giddy aunt! Seriously?! :-O

    • It's obvious that any argument i raise, you answer with aphorisms. You can't be bothered any more because you never really did.

    • So why bother
      But in terms of GBS it has a pathology =but not in a bone and Dawsons fingers are inflammation around a blood vessels so what is your problem?
      I checked out a dictionary …

    • I can't be bothered because the debates just go round and round in circles and end up with your assertion that it's all to do with CCSVI.
      If you have any questions that don't have a skewed agenda, I'd be happy to answer as best I can.

  • Not from the US – no I'm from the UK, but live in a remote part of north-west Spain. My MS nurse (rep for Serono) has patients who've been on Rebif since 1996 and who are still RRMS. With the latest Australian study on vitamin D3 absorption and beta-interferon, this may be a factor. The weather is fairly similar to that in the UK, but there's more light.
    I was diagnosed in Asia, started on Rebif (only DMD licensed there) and smuggled it from Singapore after paying cash for it (ah, happy days!) and then moved back to the UK in time for the 2002 risk-sharing scheme. I have been very lucky with it. No side effects and huge reduction in relapses and most importantly, no progression.
    I like to keep an eye on TIMS. Like many people, I was hopeful in 09, but soon saw that this wasn't working for so many desperate people and I was amazed to read of these vein grafts. No one seems to see that this isn't right. There must be many very wealthy interventional radiologists out there.

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