ZeTo or zero tolerance: why is not being adopted my more MSologists? #MSBlog #MSResearch #ClinicSpeak
“We know that when certain neurological systems are involved in MS they indicate a poorer prognosis than others? Why?”
“The motor, cerebellar and bladder systems are the three I am referring to. These systems are the so called efferent, effector or motor systems and characterised by their length and complexity. Motor or effector systems tend not to have as much redundancy in them as sensory or affector systems. Sensory systems have multiple overlapping inputs and if one is damaged and malfunctioning another takes over. For example when joint position is not working the vestibular (inner ear) and vision take over. This is why we get you to close your eyes when you are standing still to test your balance or joint position sensation. Sensory systems are also relatively simple in that they are a one-way relay nerves and don’t require coordination to function. In comparison, the motor systems don’t have such redundancy built into them and are more complex in that they require coordinated contraction or relaxation of multiple muscles. In addition, the length of the nerve fibres to the lower spinal cord that subserve lower limb power and coordination and bladder function make them particularly vulnerable to damage. Long nerve fibres or axons have a greater chance of being affected by MS compared to short nerve fibres; therefore the long fibre systems act as integrators of damage and if they are affected they simply indicate more lesions. This is simple statistics.”
“Why the cerebellar system then? The cerebellum is the minibrain that is situated on the back of your big brain and is responsible for coordinating movement. Again the cerebellum has many fibres pathways that pass up to the brain and down to the spinal cord and are responsible for coordinating movement. Therefore the cerebellar fibres are more likely to be affected by MS lesions and are another integrator of damage. What does this mean? Simply, if you have evidence of fixed impairments in either the motor (weakness, spasticity, altered reflexes), bladder (frequency, urgency, hesitancy) or cerebellar (coordination, balance, eye movements) you are likely to do worse (more attacks or future disability progression) than someone without involvement of these areas.”
“How does this information affect me? It may or may not affect you depending on the context you are given this information. The study below refers to motor involvement in CISers and the fact that they are more likely to have a second attack than those CISers without motor involvement. Therefore this information may affect your decision to start a DMT early on, or if you do go onto a DMT you may want to go onto one of the more highly effective DMTs rather than take a chance of being a non-responder on the lower efficacy DMTs. Remember there is a window of opportunity to treat MS to prevent disability; spending several years being a non-responder or sub-optimal responder on the so called 1st-line therapies is time lost. Time is brain; it is best to switch of the shredder off as soon as possible.”
“If you have established disease and you are on a DMT and have involvement of these indicator pathways that indicate a poor prognosis you may would want your neurologist to be as vigilant as possible to the possibility of ongoing disease activity so that you can switch or escalate your therapy to a more effective therapy sooner than later. The problem at the moment is that most neurologists simply monitor MSers under their care who on DMTs using clinical criteria; this is simply not good enough in the current era. Most MS disease activity occurs below the clinical surface; do you remember the my iceberg analogy? To get an idea of how active your MS is you need to have regular MRI studies to see if you have acquired new lesions and whether or not any of these lesions are active, i.e. enhance after the administration of gadolinium. In the future the MRI metrics will get more sophisticated and will almost certainly include brain atrophy and gray matter lesions counts as well.”
“There has been some criticism from readers that I live in an ivory tower and this sort of monitoring will never happen. This is simply not true. It is happening in a lot of centres across the world, not only at the Royal London Hospital. By asking your neurologist probing questions you will help change practice. Don’t accept no for an answer. If you neurologist says no; asked what he/she would like to know about their disease activity status if they had MS? The challenge is to get MSologists to think ZeTo (zero-tolerance) of MS disease activity and to adopt the strategy of treat-2-target of NEDA (no evidence of disease activity). We need to start treating MS actively, and aggressively; only by doing this we will we delay, and in some cases prevent, poor outcomes (disability progression, SPMS, etc.).”
Epub: Kalron et al. Do motor impairments detected on onset of multiple sclerosis suggest an early second attack? A prospective one year single center study. NeuroRehabilitation. 2013 Aug 7.
BACKGROUND: Factors determining the person with a clinically isolated syndrome (CISers) likelihood of developing multiple sclerosis (MS) are important for the clinician who needs to identify CISers warranting immunomodulatory treatments.
OBJECTIVE: To determine whether motor abnormalities found during the initial demyelinating event imply an increased risk of a second event within the first year.
METHODS: Fifty-two early onset CISers, volunteered to participate in the prospective study. Motor parameters collected at onset included gait, balance, lower limb peak isometric strength and fatigue index parameters. At the end of one year, CISers were subdivided into two groups, those who had experienced a second demyelinating attack suggestive of MS and those who maintained their clinical status.
RESULTS: Forty-nine CISers were included in the final analysis. Within the first year, 24 CISers experienced a second attack, while 25 maintained their neurological status. CISers who suffered a second demyelinating attack, demonstrated reduced overall lower limb peak strength compared with CISers who maintained their clinical status (411.9 (S.E. = 32.1) vs. 514.8 (S.E. = 34.1). No differences were observed between groups in gait and balance parameters.
CONCLUSION: An initial demyelinating event characterized by reduced lower limb strength can possibly suggest an increased risk of an early second attack.
To read more about NEDA please see the following post:
08 Jan 2013
“I would appreciate your comments on the following beta version of a treatment or monitoring algorithm for relapsing MSers. The idea is to adopt the strategy of treating-2-target; the target being NEDA or no evidence of …
How do you/we get this message out and accepted more widely (and acted upon)? I haven't seen this message being adopted/communicated by the MS societies/groups. Does this come back to the lack of action you wrote about in relation to the contrast in response by the MS community vs the response to the HIV epidemic?
Change a mindset but neuros also need rhe tools. Come. on nice
What is the waiting time for an MRI at the Royal London Prof? It sounds like Utopia. My Neurologist sent me for an MRI scan at a large London teaching hospital. I waited six months, it was eventually outsourced, my results weren't available for my follow up appointment. Our doctors are helping us with their hands tied behind their backs. If you are on a research program you get a scan very quick.
Have you seen this research? Your opinion? Thankshttp://www.bbc.co.uk/news/health-23932577
No I have not seen the paper yet, I have not found it in J Neuroscience. It will appear in next few days and then we can have a look, it must be just the media response after the media embargo has been lifted at the moment.However is raises the problem that if the paper were utter **** it is the media putting their spin on in, without the chance counteract the media spin. Therefore the damage could have been done.N.B. The above comment has not relevance to the paper above it is just a point that is food for thought.
Thanks MD, yes, there is always the danger of 'media spin', but I guess we are all aware of it or the possibility of it.
I think the lesson from CCSVI which cannot be ignored is that the price of losing confidence in the medical system can be great and damaging on both sides of this debate. Physicians who are mystified by all this should keep this obvious conclusion in mind. Best wishes Prof GC Ebers University of Oxford http://multiple-sclerosis-research.blogspot.com/2012/03/guest-post-prof-george-ebers.html
Please be aware this may or may not be a response by Prof Ebers.
Based on an identical post to that above with an additional comment I really do wonder if the comment above is really attributable to Prof Ebers, who has now retired and I believe is living in Canada.
Anonymous saidEr, yes Professor G, it's a wonderful idea to be offered treatment as soon as possible. However, out in the sticks, we are in the very powerful hands of our neuros. A once-per-year consultation of 20 minutes, isn't enough. If they have a particular bee-in-their-bonnet about MS – then we are quite literally buffered. There are even neuros, out there in the NHS who don't believe that people with MS have pain. Our neuros are powerful and opinionated doctors. A friend of mine, who was very well treated by the wonderful *******, was recently told by her new neurologist, that her RRMS diagnosis was incorrect and that she'd had PPMS and now was SPMS.******** hadn't given her an MRI and discharged her, cutting her off from all drug therapies that may have made a difference.She'd had relapses. Lots of them. What can she do? Nothing, because if we aren't in research studies, we don't count.OK VERY MOVING BUT PLEASE, PLEASE, PLEASE DO NOT NAME NAMES IN ANY POSTS CONCERNING YOUR TREATMENT. THIS IS NOT THE FORUM TO TRY AND DISCREDIT ANY HEALTHCARE PROFESSIONAL EVEN IF YOU ARE DISSATISFIED BY YOUR HEALTH CARE.THERE ARE OTHER AVENUES FOR THAT AND THIS IS TYPE OF POST WILL MEAN THAT POSTSHAVE TO BLOCKED OR MODERATED SPOILING THE ENJOYMENT FOR MOSTAS WE HAVE SAID BEFORE THERE IS ALWAYS CHANCE OF MISDIAGNOSIS THIS IS LOW FOR A NEUROLOGISTS (LESS THAN 5%).FIRST IF YOU ARE NOT HAPPY ABOUT YOUR TREATMENT OF LACK OF IT, YOU CAN AND SHOULD ASK FOR ANOTHER OPINION.THE POSTS IN THIS BLOG SHOULD HELP YOU TO BECOME MORE EMPOWERED.OK IF YOU HAVE HAD PPMS THEN IT IS UNLIKELY TO BE SPMS BECAUSE TO HAVE SPMS YOU TYPICALLY NEED TO HAVE RELAPSES, SO IF THERE WERE LOTS OF RELAPSES AD HAS BECOME PROGRESSIVE IT IS SPMS
I can't comment on individual MSers' circumstances. I agree some neurologists don't believe MS drugs work or make a difference in the long-term. This may because they are late adopters or laggards and need more long-term data to convince them that suppressing relapses and MRI activity makes a difference. I always quote the 21-year interferon-beta-1b data; a 3 year delay in treatment has an impact on survival at 21 years. This study is robust with almost complete ascertainment. It is hard to argue against the results.http://multiple-sclerosis-research.blogspot.de/2012/02/ectrims-2011-ifnbeta-and-21-yr-survival.htmlIf you are unhappy with your current neurologist you should request a second opinion; this is your right and is enshrined in the NHS charter.
What are late adopters or laggards?
Yes Prof G, you can't comment on individual MSers. It would be neglect if neurologists dished out drugs to patients with co-morbidities. The trials are not open to people with specific illnesses. My doctor won't give me certain drugs for my symptoms let alone DMTs and I'm happy with this. I know the risks, sometimes we have to accept we are not suitable for treatment.
Late adopters= A person that does not follow a trend very quickly, e.g. someone using a standard mobile/cell phone so "**** stoneage" verses the latest Smartphone.Laggards =A person who makes slow progress and falls behind others
And again…I did not name names regarding my treatment or diagnosis. That would be totally unacceptable. Why didn't you read my post properly before shouting at me?I have RRMS, I've been on Rebif since diagnosis and I have been very lucky. I wasn't diagnosed in the UK, but I was diagnosed by a very experienced NHS radiologist on secondment and a UK trained neurologist and I've been on Rebif for 13 years. That's me and I'm doing extremely well. I can still do all the things that I could before diagnosis. I am lucky.I was using my friend as an example as what happens when a new neurologist decides to change everything about someone's diagnosis. The patient can't do a thing as they are discharged. No names, no more information than that. I hope that clarifies my post.
Anon wroteI'm the poster who wrote about my friend. It's not me. I'm perfectly happy with my treatment, but there is no way for most people with MS to question their neuros about MRIs or misdiagnosis. Please don't shout at me. I understand the issues and didn't name names of the neuro who came up with the new diagnosis for my friend. ******* has sadly LEFT THE COUNTRY MSers will be very happy with his treatment as were those in the UK.Again. I wrote about two related issues1. People with RRMS get about 20 minutes per year with their neuro. They can't ask for extra MRIs as they'd be laughed out of the room. The neurologists can only do what their budget permits them to do.2. Trying to argue with a neurologist who has suddenly, out of the blue and with no good reason, revised a diagnosis, is impossible as well.And again. Shouting at me isn't very polite
Ok sorry if you feel offended I will not write in TROLL font and was not shouting but used troll font to distinguish me from your post. However given the threats we get about litigation, please choose your words carefully.Please read your post and see if you can see that the name you gave would appear to be the person giving the misdiagnosis. Does this smear a reputation. This person was named again in your subsequent post. Please do not do this. Without the notes etc we do not know the circumstance and the accused has not given their side of the story. It is best not to name names and then this issue does not arrive.(1) Not being a Neuro I can't speak to time management as for (2) I understand that it may be intimidating speaking with doctors.Maybe G can post on this
And again…I did not name names regarding my treatment or diagnosis. That would be totally unacceptable. I will let Prof G comment on the issue of a changing diagnosis
Mouse Doctor – I didn't say that the original doctor misdiagnosed my friend. She was perfectly content with her diagnosis and delighted with her treatment and thought the named doctor was the best neurologist in the UK.His replacement – whom I did not name, decided to change everything. This has left her feeling totally confused and worse, discharged. I DID NOT NAME THE DOCTOR WHO CHANGED THE DIAGNOSIS. PLEASE READ MY POST MORE CAREFULLY.Why do you insist on twisting my words or not reading them correctly. I summarised my points quite clearly, but still, you have misunderstood what I wrote. This is very unfair.The points were these;1. People with RRMS get about 20 minutes per year with their neuro. They can't ask for extra MRIs as they'd be laughed out of the room. The neurologists can only do what their budget permits them to do.2. Trying to argue with a neurologist who has suddenly, out of the blue and with no good reason, revised a diagnosis, is impossible as well.