“For me the best thing about going to conferences is that it allows you thinking time, and time to interact with like minded colleagues. After my platform presentation on early aggressive treatment several European neurologists came up to me and suggested we form a lobby group to get the EMA to change their philosophy regarding treating MS. I agree if we don’t do it who will? We have to be advocates for the people we are looking after.”
“At the moment we can’t offer highly effective therapies to MSers in Europe as first line therapies. This is a great tragedy. By the time we have cycled active MSers through first-line therapies to show they don’t work MSers with active MS have lost brain. They may have developed cognitive impairment that is irreversible and will almost certainly have lost brain reserve that they need in the future to deal with the ravages of ageing.”
“Time is brain!”
“Tell me of another chronic, destructive, progressive disease in which we wait before treating? Nephrologists, Cardiologists, Rheumatologists all value the kidney, heart and joints more than we do the brain and spinal cord in MS. It is time to change this nihilistic attitude.”
“I therefor propose rebranding MS as a progressive dementia, which in reality it is. People with MS don’t know it, but they have a dementing illness. The good news is that unlike Alzheimer’s and other dementias we have treatments for MS that could prevent, slow down, or stop the dementia. That is something we need to focus on. My colleagues in the fields of Alzheimer’s and Parkinson’s disease are envious of the progress we have made in MS. Are you surprised?”
“The following is a standard definition of dementia and I challenge anybody to prove to me that MS as a progressive disease doesn’t fulfill this definition.”
Definition of dementia: Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.
“I think people, including the EMA, may view early effective treatment strategies very differently if they viewed MS as a progressive dementia. Why do you think 50% of MSers are unemployed within 10 years of disease onset? Why do you think 50% of MSers are unemployed at an EDSS of 3.5; a level of disability that is not associated with physically disability? Why do 50% of CISers have cognitive impairment at presentation? Why do CISers, RRMSers, SPMSers and PPMSers have the same rate of brain atrophy? The answer is simple; MS is a dementing illness and it is time to do something about it.”
“We need to reposition the early effective treatment strategy as a preventative treatment; i.e. to prevent permanent cognitive impairment and progressive MS. Scientists in the Alzheimer’s field know that it is too late to treat Alzheimer’s disease once you become symptomatic; you need to treat Alzheimer’s in the presymptomatic phase of the disease, before your cognitive functioning is impaired to such an extent that it impacts on your quality of life and activities of daily living. Why should our strategy in MS be any different?”
“The sets of MRI studies below are from two MSers with RRMS who were followed for 18 months; please note the degree of brain atrophy that occurred during this period of time? A picture is worth a thousands words and these images tell you how damaging MS can be to the brain.”
“Thoughts please on the proposition of repositioning MS as a dementing illness to drive a change in treatment strategy?”
107 thoughts on “Rebranding MS as a Dementia”
Anything that can speed up the availability of more effective treatments for MSers is to be applauded. Time is a luxury they don't have,I hope this radical approach succeeds.
You admit it yourself. This is a radical approach. The next step will be that neuros will take the decisions for us (as was already hinted on another post on this blog), as we are dement anyway….
This is just more bumph to fog the real issues, none of the drugs are working so lets get people on them early so we can use the 'well you never know how bad you would have been if you hadn't started early' line.Using the diseases unpredictable nature has been the savior of many of the drugs used for MS.This is just taking it to the next level of corruption.
Prof G,Thanks for cheering me up on a drizzly June day! Last week it was "where do you want to die?" and this week "you have dementia!"I hang on in hope that other teams will come good with neuro-protection and repair. Otherwise, what have I got to look forward to?
Not you have a dementia. MS can cause dementia best you do something about it. If your MS is active it needs to be treated with the most effective drugs. Early treatment can prevent dementia.
Where is the evidence for this quote?How long have we been prescribing these 'Most effective drugs'?Long enough to show improvements of cognition in a long term peer reviewed study?We all know how you guys love the long term peer reviewed studies of any new ideas?
By rebranding MS as dementia you seriously downgrade it as an illness. Changing names does not add to your knowledge of MS. Ironically, the origin of atrophy is evident in the series of MRI you presented above: The periventricular area. Any comment about this finding?
Dementia is a syndrome (constellation of symptoms and signs) with many potential causes. MS is just one cause of dementia. Alzheimer's being the most common.
You are conflating enlarged ventricles with atrophy in the perventricular area. Whilst there are periventricular lesions in some MSers (correlating with cognitive decline) in general the enlarged ventricles may merely reflect total brain tissue atrophy (as seen in Alzheimer's brains). The brain tissue shrinks and the ventricles enlarge to fill the space available. There is no attempt to downgrade MS as an illness, merely an interesting proposal to flag up the urgency needed to prevent brain atrophy by better and more aggressive treatment.
If the periventricular area has no more atrophy than the rest of the brain, then enlargement of the ventricles would apply stress to the periventricular tissue. How can this enlargement compensate for the volume loss of the grey matter? These regions are centimetres apart. Do you imply than the brain is not only smaller but also transfigured?
There are superficial and deep gray matter structures; the latter are in close proximity to the lateral and third ventricles. MS has a predilection for the latter (thalami and basal ganglia). I like this concept of MS being a dementia; any chance on improving on the concept? How about the commonest cause of dementia in young adults? Dementia on its own implies old age; you need to make it young and relevant before the European, Fat Cat, bureaucrats take notice.
VV the sulci are also enlarged in MS brains, indicating the atrophy is more generalised than you suggest. The CSF filled ventricles enlage to compensate to maintain overall volume so the brain doesn't rattle around in the skull!http://radiology.rsna.org/content/214/3/665.full
"MS has a predilection for the latter"So, from all white and grey matter, the part that is most affected lies around the ventricles. This is a known fact. If you take a look in the brain MRI of an advanced patient you will see the lateral ventricles outlined by periventricular lesions.None of the doctors here has an explanation for this.
I'm sure you do! 😉
No, it is not a known fact. The lesions you quote tend to be the most visible on MRI so may be overreported. There are also abundant cortical/grey matter lesions on histological examination that are not periventricular. so you can't just rely on MRI.http://brain.oxfordjournals.org/content/122/1/17.full
MD2, you 'll be happy to know that the aforementioned study is used by Dr. Franz Schelling in support of his views!"Small cortical lesions are common in multiple sclerosis and are under-reported by MRI"which means their volume is far inferior to that of the white matter lesions. Moreover:"Histological examination of case II revealed 328 lesions, of which 14 (4.3%) were cortical, 108 were juxtacortical (32.9%) and 206 elsewhere in the white matter (62.8%)"which clearly indicates the direction of the causing factor from inside-out and the subsequent reduction of lesion number as distance from ventricles increases.But the essence of the study is the profound association of cortical lesions with major cortical veins the same way as Dawson's fingers are associated with major periventricular veins:"the majority arose within the territory of the principal cortical veins, whilst the remaining quarter arose within the territory of the small branch or superficial veins."
For a lesion to occur, lymphocytes must gain entry to the CNS via the vasculature so the association of lesions with the vasculature is a bit of a no brainer. I think we've tried to get Dr Schelling to air his views on this blog but to no avail. Just as we tried to get you to the last research day but again to no avail.
"For a lesion to occur, lymphocytes must gain entry to the CNS via the vasculatur"only if you believe that lesions are caused by lymphocytes. This is far from being a fact. Lymphocytes just take the inflammation to levels that microglia can not reach. You really can't get your mind to imagine that lesions can be the result of pure mechanical injury, don't you? Tell me then why cortical lesions form around MAJOR veins rather than smaller veins. I believe you agree that it's easier for lymphocytes to cross the BBB where the blood speed is low.
How do we know we have cognitive problems? I think I am normal. Can I have my cognition checked?
Most MSers are not aware of cognitive problems, because they compensate for them using the reserve capacity of the brain and its ability to adapt. MSers need need much more effort to achieve a similar cognitive task as normal people; this is one of the reasons why they suffer from fatigue. To test your cognition you need to have a neuropsychological assessment; this takes 1 – 2 hours to complete. Most of the cognitive deficits detected in MSers are silent, but they clearly impact on MSers ability to function normally. I don't routinely do neuropsychological assessments in clinical practice simply because how does it help telling you that you are cognitively impaired, when we don't have treatments that work for cognitive impairment? The one situation were it does help is in occupational health assessments or insurance claims to get objective evidence to support early retirement from work or to support an insurance claim. Only rarely does MS present as a frank dementia with loss of memory etc. Dementia is usually a late stage phenomenon that develops slowly typically as part of progressive MS.
Tysabri reduces brain atrophy and improves cognitive function in several domains, check out the Italian pilot studies.
Knowing that my cognitive ability has affected my confidence greatly. I'm sure my memory has worsened, but not being able to understand what people are explaining to me is awful for me and frustrating for them.I am relectant to join in conversations now…..people don't believe that I used to be an intelligent and quick-thinking person.I have had a cognitive assessment (part of the BICAMS project) but I don't get my results until August.I am on Tysabri – what other treatments are available?
Having PPMS and reading posts like this is just brilliant. We have no drugs to treat us and will never qualify for medicines that halt our declines caused by MS. It makes me feel totally impotent and scared – as if there is nothing anybody can do to help me the way RRMSers have hopeful strategies in the waiting. It's not fair.
You're right. It sucks. Which is why we're doing our damnedest to bring neuroprotective therapies to the table. Trials ongoing by Prof G.
There are 2 fully recruited trials in PPMS and I have been invited to sit on a steering committee for a new PPMS trial. I am confident one of these studies will be positive. Interestingly, cognitive impairment is less frequent in PPMS as it tends to be a disease of the spinal cord rather than the brain.
Gilenya and what are other two?
Ocrelizumab, which is a humanized anti-CD20 monoclonal antibody, is one of them. I think that anti-CD19 monoclonal drugs may be another target.It's all very well hoping that these drugs work in treating PPMS but trying to get the NHS to supply them will be a different matter.As a RRMSer, I can't help but feel the frustration you guys with PPMS must encounter. You've been very neglected by the MS industry.
With you all the way Anon (on both counts), progressive MS has only just started to be taken seriously ( the words of this blog around 18months ago). WHY ?PPMS'rs have been the 'poor Relation' for far too long, where does early and aggressive treatment apply to these people ?As I've said on here before, what's written on here and what happens at the 'coalface' are poles apart. Now this might well be a one sided perspective, but given the fact that one has to jump through burning rings of fire, walk on hot coals etc etc just for some medical professionals to take a look on a symptom by symptom approach. Not everyone has the support or detrmination to keep pushing for what should be a basic right of anyone of anyone qualifying for NHS treatment.I appreciate going off at a tangent, but given one's own experience the term, 'Early agressive' or any other marketing term, whether it be for dementia or any other condition associated with MS, isn't inspiring hope.Can I ask what criteria has to be met for someome's MS to be defined as 'active' ? and hence have any chance of a Neurologist giving more than a, push me pull, stroke of the feet and face and at best a sympathetic gaze with an appointment to do the same in 6 months ?One would have thought that if a fit active inteligent person can go from a dx 5/6 years ago to wheelchair dependant, loss of bladder (although after jumping through hoops for years this seems to have been resolved with botox, more of the same approach please), no fine motor skills (not being able to cut up dinner or sign a name) and many many more would qualify as active MS.?Back to dementia and not wanting to sound crass, but given the above and knowing little will be done anyway if one with the dx of ppms is suspected of going down this route, it might be a blessing if they now little of what is happening. :-(Rant over, Regards as always.
If you went early and aggressive PPMS I suspect progression would not have shown itself by then. So it would be all MSers in the same boat.The central problem is having the drugs available and then allowing their prescription, until the choice becomes available we go round in circles. For each drug there are NICE guidelines on their use, this is abit prescriptive.
Speaking as a patient, still employed, the problem I see is that if you publicize the cognitive aspects of MS, more of us will lose our jobs as employers take quiet preemptive action to prevent problems later. As long as we are seen as physically disabled, or not disabled at all, we have more control over how long we work. I strongly agree re the need to get access to aggressive treatment. Thanks for your efforts.
Just testing the waters; I suggest we wait to see the outcome of the survey. Another thing we agreed to do is to replace the adjective of aggressive with highly effective. At the end of the day the licensed, or soon to be licensed, therapies are not at all aggressive if you have MS. Bone marrow transplantation with a mortality of up to 5% is aggressive. HIGHLY EFFECTIVE AGGRESSIVE
I agree, I am working myself and trying to keep my job. I told my employer I had MS; I have had a lot of unexplained issues over the last few years. Telling or not telling should be an individual choice…
The EMA are not going to listen to you Prof G. Why should they?
Probably not if we remain passive. More people need to stick their heads above the parapet. Do you remember the days of HIV activists? Where are the MSer activists? Why aren't their MSers camped outside the EMA? Why are MSers not lobbying ther MEPs? Why are MSers so passive? I sincerely hope this post, and this blog, starts a wider debate. All you need to do is come to my Thursday afternoon MS follow-up clinic to see what MS can do to young lives. It breaks my heart to think that the onset of their disabilities could have been delayed or prevented.One of the problems is that everyone is pinning their hopes on neurorestoration. I hate to disappoint you, at this point in time neurorestoration in MS is SciFi. Yes, science fiction. We are decades away from effective neurorestorative therapies. We need to focus on the here and now; that is getting MSers with active disease onto highly-effective therapies in the hope that they will prevent progressive MS and MS dementia. This is easier said than done.
Thank you for being so candid. There is nothing more discouraging than the press overhyping "breakthroughs" in MS insinuating a cure is right around the corner. But some researchers are equally to blame. They seem to thrive on the ego boosting acclaim they receive after publishing their work.
The first generation DMDs were ineffective enough that it created a distrust. I think MSers could be less activist-oriented because of fatigue and because it is not clear what to push for. Everyone I know with MS is in the CCSVI community and is very activist-oriented. lol.
Even in the academic field their are scientists that maintain that the underlying mechanism of ms is not known despite the overwhelming evidence that it is an autoimmune disease. For some reason these mavericks seem to have the loudest voices.Since people with ms are likely to be in cognitive decline when they are diagnosed, they probably lack the faculties to be able to understand valid concerns about ms. Instead we have activism based on simple explanations of the disease with no scientific basis to unify them.
Although I am an autoimmune fan take a step back and ask What is the real evidence?Genetics…there is an immune bentHistology…there are immune cells this would happen with a virus tooalso what comes firstAutoimmune cells….present in healthy peoplemyelin autoimmunity….maybe not major feature in msersResponse to immune modulators…..removing B cells & viral poolDisease worsening with altered peptide myelin ligands..best evidence but people got polyneuropathy i.e. peripheral nerve disease not always MS. Not sure it is the Mavericks with the loudest voices but the Scientific Mafia..to which *hit don't stick…that then get the lemmings to follow. Keep an open mind if we all become a monoculture and chase the same thing, if wrong then we all waste our time. Who would have thought that ulcers respond to anti-bacterial.
After reading a lot of research and looking at the data, MS as well as many other auto-immune dieseses are causeed by a loss of self tolerance. In particular, the natural regulatory T cells appear to be defective in MS.http://www.ncbi.nlm.nih.gov/pubmed/15067033You may say this is just the flavor of the month but Tregs have been proven to be real and their defecincy in MS unquestionable.Regardless, I agree with Dr. G that we need to identify those people that are rapidly progressing in the begining and halt their disease. But to me the best way to do this is with a non-myeoblative HSCT protocol. In contrast to a myeoblative protocol (which Dr. G. has pointed out has a 5% mortality rate), this protocol is much less dangerous, and would be comparable to the safety of a second line drug such as Tsybari.http://clinicaltrials.gov/ct2/show/NCT00273364This procedure is intended for people with RRMS who have failed a first line therapy and show signs of active disease.Currently in phase III trials in which no deaths have occured and 100% of diesease activity and progression has been halted after 5 years. My opinion that this is the best option for people with aggressive RRMS disease who do not respond to first line therapy, and also gives a lot of credance that MS is an autoimmune disease and not a problem with a leaky blood brain barrier, venious restrictions, etc., etc.The patient movement behind this has already started.
It is a lot more unsure than what you suggest. There are since the study you quote a number of studies indicating that in fact the number of "T regs" in MSers are normal compared to controls. Studies have attempted to show that these MS Tregs are in some way deficient in their activity compared to nonMSers but are unconvincing particularly as the labs attempting to show this are trying to defend their pet paradigm.Also re loss of self-tolerance, this theory would have more credence had the antigens to which tolerance is lost had been definitively identified. They haven't, which is presumably why Steve Miller's recent trial may be a bit of a bust.In my opinion, the definitive first-line therapy for MSers with aggressive MS is alemtuzumab, which is what I would be taking if I was faced with this scenario.
I'm on Tysabri (Natalizumab) – MouseDoctor2 -why would you take alemtuzab, and what are the advantages over Tysabri? The options were never discussed with me?I am a big fan of this blog – please keep it up!
MouseDoctor2, the paper I submitted does not indicate that the number of Tregs in Msers are deficient. It shows that they are less suppressive.At any rate, Alemtuzumab directs the immune system to target CD52 bearing lymphocytes. This to me is nothing more than an immunosupprsant. I dont' understand the view that this is a approach to restoring self tolerance. Not to mention the increased risk of secondary autoimmunity.If all I wanted to do was suppres my immune system I would take Azathioprine, but this has never been testing in a MS trial so we cant say it is any better.I guess the point is the current definition of "effectiveness" (2 year reduction in MRI activity and relapse rate) is not in any way an indicator for halting long term progression.
My mistake, however since this study was performed, a more recent study suggests that this isn't the case.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2525698/No-one is saying that alemtuzumab is perfect, it isn't and for me too broad a brush. However, until we can specifically reintroduce tolerance to the antigens that cause MS (whatever they may be and will probably be different from patient to patient), which is also my preference, it's the best we've got.We can do this in our mice very effectively and have published on it but seeing this effectively being dome in MSers is to my mind some way off.
T regs are proven….how do we explain the effectiveness of dacluzimab that should wipe out T reg function?
It is believed that Treg function is defective in maintaining self tolerance in many autoimmune diseases. By destroying the defective immune system you allow a new, naive one to develop which does not have the memory of the defective one: http://www.ncbi.nlm.nih.gov/m/pubmed/18256318/
How do you answer the point about dacluzimuzab? This stops lesions in MS yet wipes out CD25 positive cells of which "Tregs" are a major component, if everything was as well worked out as you sat, dacluzimab should make things worse.
Not everyone with MS gets demented. How do you explain this?
Not everyone with Alzheimer's disease gets demented. In fact the majority of people with pathological evidence of Alzheimer's disease at post-mortem are not diagnosed in life. Maybe they had benign Alzheimer's disease?It is a numbers and time game. Our brains have reserve capacity; you can get along with quite a lot of neuronal drop-out. But at some stage the dropout becomes too much and the disease impacts on your quality of life and day-to-day functioning. Or you get tested or die before this happens and you are then labelled as having benign MS. I am not promoting that we treat everyone; only the MSers with active MS.
Do you work at being illogical or is that your natural state? IT IS NOT A GAME!!! You want to play games, go to Los Vegas. You want to be a doctor, start acting and thinking like one.
I know I am eating into my cognitive reserve – and that cognitive impairment has had by far the greatest impact on my quality of life. But it has taken over 3 years, and moving to a different area, to even get an appointment for a neuropsychological assessment (role on 13/6/13). And then what? It won't change my treatment options, and I doubt I'll be able to get a new MRI any time soon. But it is a start, to at least get someone to recognise that this is an issue. I'm not expecting miracles, but it will be nice the next time someone tries to dismiss my concerns, or pats me on the head and says it is just a sign of getting older, to be able to wave a piece of paper in their face, saying look what the professionals found.It is great that in amongst all the good research, finally phrases like cognitive reserve are gaining traction as something to consider, but getting that research translated into practice? One can hope…..
I'm a big fan of mossy saxifrages!
I agree with others that dimentia has too much of an association with the elderly. A better phrase that may convey what happens in ms is "cognitive decline".
Lets face it any description is going to associated with a decline in ones powers, so how about Premature ageing
Whilst I agree that cognitive decline is a significant and disabling symptom I am very against "rebranding" MS as a dementing illness. There is already a lack of understanding and awareness in the community about MS; why confuse the picture even more and potentially increase stigma in our lives by emphasising one symptom that has such a negative connotation and is so poorly understood?I totally agree with the need to treat early and to treat more aggressively. I have never understood the UK's reluctance to treat early. Here in Australia it is standard practice to treat immediately at diagnosis and now most people are being started on Interferons when Dx with CIS. Uptake of the new drugs such as Gilenya is rapid here and with BG12 set to roll I know the uptake there is set to be enormous. I for one am about to start it next month as soon as it is available. My point being that rebranding the disease is not necessary for earlier and more aggressive treatment. But I think a shift in the prescribing models in the UK and more effective lobbying from neurologists to NICE would be useful using overseas data to demonstrate that early treatment has a cost effectiveness in terms of people retaining employment for longer etc…. as well as the obvious health benefits. But Govts like to see monetary benefits so playing to their tune may be wise too.And on that basis rebranding it as dementia may just freak the Govt and various local authorities into thinking MS will be nothing but an endless money drain as all these young adults are doomed to a lack of productivity as we all are about to go ga-ga, to say absolutely nothing about scaring the complete beJesus out of every newly diagnosed patient in the country. Now it isn't enough to have to counter the myths that the Newbies think they are all doomed to a wheelchair, they will all think they will be dribbling veggies as well.C'mon, Prof G….. I think you'd better think it out again…..
Brilliant reply. This word, 'Dementia' is terrifying at so many levels. Everyone knows that Alzheimers and Dementia have no good treatments and so what's the point of treating them and now MS? (this will be the NICE viewpoint)We had enough problems with that BMJ letter fiasco, that prompted The Independent's perennially lazy health columnist to write in big, black letters for us poor MSers, 'The MS Drugs Don't Work and the NHS is Paying for them' Boo, hiss and very, very WRONG.We need more MRI's to track the real numbers of people that are progressing. At least 90% of people diagnosed in the UK only have one MRI. Scandalous.Even more scandalous is the action of neurologists, who discharge people with PPMS and SPMS and don't ever bother to find out how they are doing. MS is scary enough, but if we have to fight for fast and fair access to drugs all over again due to this new rebranding of MS (the late 90s and before 2002 were terrible years for MSers) then WHY? Neurologists should be lobbying NICE. You aren't ill guys. You don't have MS and we are in your (representative, collective) hands and too many neuros – especially in the UK, are washing their hands of progressive patients and have a very negative attitude towards most drugs. After this rant, I would like to write that I applied for the Campath trial in 2001 and I really wish I'd been accepted. Perhaps I'd have had some better years without trying to heal from one or two nasty relapses…I was told last year, that in my neuro's opinion, I hadn't progressed. I guess I'm lucky, but those few relapses that I've had over the years (despite Rebif) took months away. No, I think that people with MS don't want MS to be rebranded. It makes me sick to think that it could be classed as a form of dementia. You can't spin this as a positive issue. Really.
I think you are both missing the point of the argument. Prof G is simply stating that people are ignoring the fact that MS is a dementing illness that is treatable. If we acknowledge this fact he, and others, can then use it to justify early treatment. Delaying treatment increases your chance of becoming demented. As awful and scary as it sounds if this is the case we cannot ignore it.
Who said MS was not a stigmatizing disease? It is possibly more so than dementia. Most people with dementia are past retirement age and don't have jobs to lose. MS is different; it is a young person's disease. If early aggressive treatment can keep me in my job longer then I want it ASAP.
The situation in Australia judging by your post seems to be much better in respect of getting much quicker access to treatments. The situation here in the UK (and in much of Europe too) where this blog is based is not as good. Anything that can speed up the rapid prescription of EFFECTIVE DMTs to as many MSers as warrant them is to be applauded and if this means offending some tender sensibilities by rebranding it as a dementing disease (which will be taken seriously by the powers that be) then so be it.As Macolm X said "By any means necessary"
Where the hell are these 'effective DMTs' as far as i have seen none of the current treatments for MS make any difference to long term outcomes of the disease.All this smacks of moving the goal posts so we can move more ineffective drugs.Early treatment is not the key it just foggs the real ineffectiveness of the drugs.I could have been given 2 vit c tablets for the first seven years of my ms and it would have been claimed a huge success as i had few relapses and complete recovery.This is the nature of the illness and it is being used and manipulated to give 'scientific gravitas' to second rate treatments that are at best ineffective and at worse downright dangerous.
Dear Everybody Read June 13 Anon 8.54 as they have got the message and the point.If there is no change to status quo you will not get the chance to do anything about, it will be DMT first line cheap, then DMT second line expensive, maybe DMT third line even more expensive. There needs to be a change in the way MS treatment is approached.
Dear MouseDoctor,I am the Original Poster in this part of the thread and I agree there needs to be a radical overhaul in the way the UK prescribes DMTs. But is rebranding and picking on one symptom only the best way to achieve this? Especially when other countries DO have a more successful track record of early treatment than the UK without resorting to what amounts to scare tactics?Why not explore what other countries do successfully before over turning the whole MS paradigm?
Early treatment is critical but identifying people and suggesting to them that they accept a treatment like Tysabri and the risks associated with it may be difficult. My partner had optic neuritis in 1993. Was not given a diagnosis at the time. 11 years later he was finally diagnosed by Dr G., after non-specific symptoms such as pins and needles, panic attacks, continued fatigue etc etc. Now diagnostic tools are so much better that he would have been diagnosed after the first symptom, but I don't know if he would have taken Tysabri, as once the neuritis wore off he didn't have any symptoms for years, but they crept up gradually. I would advise anyone to have the aggressive treatments but whether or not they would take them is another matter, as the treatments are pretty scary too!!
The treatments are not as scary as the MS unemployment figures? A good friend of mine committed suicide 4 months after being made redundant. He lost his self-esteem and with it his will to live. He was normal. Imagine what it would be like having MS and being unemployed? More than 50% of people with MS are unemployed; this partly explains why the suicide rate is 4 times higher in people with MS compared to the population. Give me the scary stuff any day of the week.
Take note respected doctors, people are killing themselves while you sit in your ivory towers and pontificate about classification and argue the toss about a proven theory while standing behind the 'we'll let others do it' approach.You know the score here, for gods sake step up and help people.
I thought i had alzheimers because of my increasing poor memory and was relieved to find out that i didn't, i was diagnosed with MS instead! Now you seem to want to say i have both, a double whammy…I think i would rather just stick to the MS…that's enough for me!
Seriously??? You're going to tell us what we don't know??? We live with this thing 24/7 and your're going to tell us what we don't know. I would love to hear how you can "redefine" an unknown "disease" without any proof. It has been defined as auto immune far too long and it's an unproven theory that phara and MS neuros have thrived on. How do you randomly pick a label out of a hat to redefine something of an unknown origin??? Last I checked, paralysis, incontinence, loosing your vision, pain, numbness, balance disturbances etc., etc., were not classified as dementia. I personally find this insulting and full of arrogance!p.s. check our veins
Say no to drugs and figure out what pathogen starts this downhill spiral like Lyme, Babesia, CPN, Bartonella and so on. Until there is decent accurate testing for these things nothing will ever be answered.
This Lyme babesia etc etc etc mind set to the detriment of drugs with known effects is in my opinion not such a wise thing
The only known effects of drugs is that they do not work and often kill the patient. Mind you, anyone foolish enough to pay attention to a rodent, doctor or not,probably deserves what they g.et
I read the entire article. And filled in their sick little survey including a comment. Here is my comment:What mental midget wrote this crap? Clearly not anyone who ever actually listened to what an MSer was saying. Here is an approach that I would love to be able to say is new – doing so would get a lot of you off the hook – but it is not. It is, in fact, as old as the hills. First – start listening to your patients- a novel idea to you I am sure.Second, test for other similar symptoms that are part of diseases like Lyme and Cpn – both treatable spirochete diseases that can be found with PROPER TESTING. That alone will have lowered the number of MS patients. Third, check for misalignment of spinal areas that slow down or stop the proper movement of spinal fluids. Send these patients to doctors who know how to fix them. Fourth. check out the blood flow from the brain. If it is slow or non existent,fix it. If doctors are smart enough to transplant hearts, surely they are smart enough to transplant veins – of gee! This has already been done and wonder of wonders, the brain matter affected has over time, regenerated itself. There are undoubtedly other solutions as well – try looking for them and stop listening to the idiot who coined the expression "Time is Brain'. I would not trust him to put a bandage on a paper cut!! Those of you caught up with the autoimmune tunnel vision of most MS neuros should all be in jail for killing off patients to accommodate Big Pharma and/or your sick egos.
Here Here well said.
With a name like dragon slayer…maybe a little too much science fanasy
no fanasy or even fantasy there md just a few hard hitting facts.well said MSDS.
OK I can't spell… where are the facts published…youtube is not accepted.
Most of it is basic common sence, no youtube involved.Facts? ha, thats rich coming from an immune theorist.
Is this just a strategy to get British MSers on drugs faster–so that they can take the useless poisons longer? I am so glad I was diagnosed before there were ANY "approved" drugs. I feel really sorry for the newly-diagnosed who now have a long list of drugs that their neuros can keep pushing–"oh, if that one didn't work, then you can try another one…"I am PROOF that the vascular connection should be taken seriously. Following my diagnosis in 1990, I thought I'd be one of the lucky ones who never developed severe symptoms–I'd only had strange numbness and tingling sensations that prompted the diagnosis. That all changed in 1992. I had 3 SEVERE attacks that left many disabling symptoms. I could no longer work. Although I could still get around in my home while holding onto walls, I required an electric mobility aid (scooter) to travel distance beyond about 20 feet outside of my home. By 1997, I had to move to a one-level apartment because I could not manage stairs. Although I was originally relapsing/remitting, by 1994, I had become classified as secondary/progressive. This meant I was just supposed to accept that I would NEVER improve, just progressively deteriorate—they just didn’t know at what rate of speed. The “secondary/progressive” label also meant that even when so-called disease modifying drugs came on the market, I was not eligible for them because they were only for relapsing/remitting cases. NO TREATMENT WHATSOEVER AVAILABLE FOR ME!In March, 2011, I went to the U.S. for restoration of blood flow from my brain and restored my balance, improved my drop-foot, eliminated my heat intolerance, banished my "behind-the-left-eye headaches", along with many other improvements too numerous to list. My neurologist, who had not been in favor of this treatment, had to admit I am "significantly better" and did neurological tests that PROVE IT! More than 2 years later, all results are holding–and I'm not the only one! Stop promoting poisons an give us proper blood flow!
If only doctors had collected this information in a proper way it would not be just anecdote, which is not a lot of use I am sorry to say.
both patronising and dismisive, Thanks to Lorimayb for your input.long may your improvements continue my dear.I found it very useful, all the best.
The ongoing disrespect you MS Neuro's show towards people who live with this catch all disease just blows my mind. When someone tells you they have improved without drugs due to a simple and safe procedure…you insult them saying it is anecdotal like you are saying they are lying. Because if you actually listened to them and encouraged proper studies then you will have to admit that you might just have been wrong all these years. You doctors have become so arrogant and self serving that eventually you will become irrelevant because no one will trust you or respect you. People with MS have 2 choices, one listen to their Neuro and keep taking drug after drug believing that they are helping, when in fact they are proabably causing more harm. OR take their own health and welfare into their own hands and make decisions based on best efforts. Where has the medical compassion gone where now the doctors are fighting against patients that are actually helping themselves and have improved their quality of life. The MS Neuro business is a complete scam and you doc's will do anything to keep your profit center even if it means intentionally hurting your the very people who should be helping. I suspect if you could team up with a Pharma company and push a pill to treat CCSVI then you guys would be all over the vascular theory…of course you would have to spin it like it was your discovery first. This whole topic is nothing more than an intentional distraction to the uneducated and a preface to increase your patient count and profits.
I am not a neuro…..If I say I am ace…..will you believe it? You should ask for the evidence. That is what we do. Without evidence I can say the worl"Increase your patient count and profits"..Do me a favour. I can't be bothered to respond any more.
It seems so lovely now to have the label of dementia as well as MS! I know that I am healthier than I have been in years as a person with RRMS. This is because I am not taking any drugs for my MS, have had some of my blood flow restored from treatment for CCSVI and am now working on other strategies to improve my health. These include chelation of toxic metals (my mercury levels were through the roof), major diet changes (including Gluten Free) and hopefully soon treatment for CPn, which has been found in my blood. Rather than looking for medications why are we not looking for these types of therapies? Not only have vein valve abnormalities been found on autopsy of MS brains but so has infection with such bacteria as the Lyme Disease causing spirochete.Money for new pharmaceuticals appears to drive any effort to help us. I for one cannot buy into this.
Prof G, it looks like the nutters have arrived. I suggest you switch off the comments on this post.
yes, nutters who are feeling better after simple angioplasty treatments have arrived… poor sods dead or crippled by PML didnt make the party… neither have the test subjects from Mitoxantrone whose hearts are permanently damaged, or the 15 Gilenya patients whose deaths the EMA investigated… and lets talk about the MS patients who have only spinal MS lesions – tend not to have dementia… frigging amazing how those autoimmune/viruses/bacteria restrict themselves to particular areas in the spinal cord… I will bother wasting my life seeing a neurologist again one day when I can find one who can explain how autoimmune or viruses physically tug on the denticulate ligaments in the subarachnoid spaces of the spinal cord… spinal MS lesions form across the denticulate ligaments… (Oppenheimer 1978)… suppressing or altering the immune system cannot conceivably prevent that physical damage – an inconvenient truth about PPMS – so pity the poor souls on Gilenya and Tysabri trials flogging a dead horse on that front because their doctors are ignorant of basic anatomical knowledge underlying the formation of spinal MS lesions
But what I really want to know is what CCSVI does to turn everyone who has it into a rabid evangelist who feels called by Jesus to overwhelm everyone else until we validate your vein-expanding choices. Someone should do a study on that.
when people get better – they want to spread the good news – God has nothing to do with it… in fact – the most important thing that happens to people who have treatment for venous conditions (CCSVI is a crap description) is that they woke up and realised that neurologists and neuroimmunologists dont cut the mustard in the God doctor stakes… they are not even curious enough to wonder why 'nutters' talk about venous angioplasty… or they daren't be curious more like – as lets face it who wants to find out they spent a career in a blind alley… poor loves, my heart bleeds for them… not all us MS patients are so affected by dementia that we cant think for ourselves and do our own research…. makes us strangely non compliant with what neurologists tell us is good for us
Heddgehog is taking a pounding this weekend
Are you people mad? I had reached SPMS in 2010 when I was treated for CCSVI. The report indicated that not only were my L and R Jugular Veins were narrowed but my Azygous vein was as well. Can you understand that the heart is the pump and if you can’t get the blood that pumped by it into the brain back out, there is residue left. This is what is certainly causing many people to have problems. Since my treatment I have regained many of the things I had lost and am a functioning person again. The idea that I ever had “dementia" is verging on insanity. It is time for the MS Neurologists to quit getting kickbacks from the drug companies, time for the Drug Companies to stop subsidizing the various stages of government in your country and every other country and time to allow open research on all aspects of this condition so nicely containerized as MS.Amazing how so many other illnesses that are mimicking MS that are now being spoken of more freely. If you further containerize this thing called MS then a portion of every country will be doomed. What an absolutely ridiculous message to be sending out. Do not proceed!!!
Dementia! Why not leprosy? People with Multiple Sclerosis are treated as second class citizens with labels we already have to bear. Is it really necessary to replace one flawed theory with another? It's interesting that after 60 years neurologists have some need or desire to change their tune. Either way, the common denominator will always be disease modifying drugs that do not work.
Give me a break, question 2 was/is stupid. Naturally we would love some treatment, like the CCSVI treatment or ANY treatment to prevent cognitive impairment. It also suggests that MS is a form of dementia.That brings me back to question 1, not relied to…til now. Does the author of that question, number 1, have some "dementing illness"?
I’ve spent half an hour reading some of the comments, and here are my impressions. First, to rebrand MS as dementia, one would need more than one imaging slice. Do all people with MS have this type of reduction on brain matter? Is this MS, or is this simply a side-effect of the disease? Second, many have suggested that early intervention with pharmaceutical agents will (may have?) prevented further brain loss. Is there any proof to this from longitudinal studies, especially since the first generation of interferons have been failures? Third, to refer to people who have had treatment for blood flow issues as “nutters” and “rabid evangelists” is quite inappropriate. These types of inflammatory comments are uncalled for. If a group of people having success with Tysabri came on here and “preached the same message”, I’m not so sure they would get the same disrespectful treatment. Fourth, my fear here is that only one piece of a large puzzle is being considered. Yes, some people with MS have proof of brain shrinkage. Do we need to magically sweep an all-inclusive wand with “many patients with MS have signs of dementia”? After all, normal aging brings dementia on. We need a cure more than ever. Period! But seriously, if MS is actually dementia (or signs of it), many of my friends with MS must have been absolutely brilliant before, because they are still some of the smartest folks I know.
I also find very inappropriate words here related to CCSVI. Why people or should I say neurologist are in such a hurry to put CCSVI in the trash basket? There should be co-operation in science fields – not this kind of polarisation. My wife have been symptom free now 3 yrs since her procedure and that is absolutely fantastic.
Right on! and WTG erkki
The only “nutters” and “rabid evangelists” are the author and those who have bought his insane theory. I have SPMS and my IQ is 127 – down from 130 more because my hand cannot write the answers as fast than because I am headed for dementia. And people with similar IQs are scattered all through these comments. It is doubtful if the author or the “nutters” and “rabid evangelists” can raise theirs above 79 even if they work at it. You want to pick on brain power, go somewhere else and target some other group.
Its no wonder, that I strongly support CCSVI and it's research. Over 3 yrs ago my wife had many issues; fatique, weakness in right side of body, spasticy, balance problems and low mood / depression. Soon after procedure she got back strenght in right side, balance got normal, fatique disappeard, and mood.. she became happy again. After treatment she started exercising hard with weights and can squat impressive amount of iron 🙂 Now lately we have been training boxing. This short videoclip is taken last week – she can punch hard.. 🙂 🙂 https://www.facebook.com/photo.php?v=10200096456922794¬if_t=like
It's interesting that you removed my comment after Gerry Wag called me stupid. What's the matter, was it too close to the truth for comfort? No you don't want to hear from me, you delete any comment I make if it's more than a one liner. I also noticed that no mention was made about who deleted it or why. This blog is as transparent as sludge.Hurry..delete before anyone realizes your bias and prejudice.
We removed a comment after someone called you stupid was it too close to the truth… Who deleted you It was not me of MD2 so take it was either Prof G or google…it is not in spam box, I save comments in spam you never know when you want to use them. For example I was called a toileT ROLL…wonder who left that one..maybe a troll.Simple rule of thumb re deleting if you are advertising some product with a link and importantly if you are being offensive without being constructive, there is a high probability you will end up in the bin. Trust me Prof G is used to being called lots of things…If we were in USA we might have a written constitution but we are not so hey-ho. But are you are saying the "blog" is a "bog"
Given the EMA has contraindicated Gilenya in cerebrovascular disease (as well as cardiovascular conditions) it wouldn't be so great for Novartis' share price to push this rebranding of MS – given Vascular dementia is related to blood flow problems in the brain and mini strokes.. you are nearly getting into CCSVI and venous disease territory… in which case the early diagnosis required would involve MRVs, CT angiograms… NOT stupid early aggressive MS drug therapies.. the degree of delusional thinking in neurology defies belief, is it any wonder that informed, thinking MS patients have zero respect for, and nothing to do with, neurologists.. Are the esteemed bloggers on this site assessing their patients for cerebrovascular conditions prior to prescribing Gilenya? Have they considered the level of venous angiomas in people with MS or associations with cerebral venous thrombosis? If not – why not?http://cds.ismrm.org/ismrm-2004/Files/001503.pdfeven one of the biggest CCSVI cynics, Traboulsee, should know better it seems…
My friend prefers not to qualify the thread with his feelings..I'm obviously not and don't expect it be here any longer than mine was. "Well after the first couple of lines Linda, I began to fear reading this academic claptrap WOULD CAUSE me to dement. In my opinion Dr Giovannoni is a pure academic with a strong and main interest in merely publishing his ideas whether they be re-inventing the wheel type of time-wasting nonsense or not.To simply describe sets of symptoms and, sticking in some slides of damaged tissues and organs then classify these things 'conditions' is what we in Vital-now have been fighting to eradicate from the medical research; i.e. the wittering on with no recourse to actual proven scientific causal factors whatsoever. Even a Motorbike crash or an STD can cause demented presentation. My Mental health studies taught me that you can really only 'categorise' into 'Organic' or 'Functional'. The former is illness known to be caused by or associated with 'Organic Brain Dysfunction' e.g. trauma, which itself includes damage through infection like Syphilis or Genetic or Chromosomal disorders like Huntingtons Disease, and the the latter are illnesses that relate to behavioural and/or social aetiological issues.Clearly 'Scleroses' ( scarring or Lesions ) falls into the Organic bracket and Many lesions (Multiple Sclerosis) must have organic factors. I do not see how anyone can take a set of consequenses and take the collective label and present that DESCRIPTION as a 'Condition'. What is happening is that some called experts are looking at physical 'consequences' and doing exactly that, when they don't even show an awareness of the historical research that has been done.Now I, myself, am getting into the 'Medicine' when that is wrong, my not being a doctor, and it is up to us to ask and encourage doctors to :a) take competent histories and take account of relevant datab) have a professional awareness of legal and ethical duties by which they are bound – that in itself is an unfair and stressful situation for any patient to be placed in.As Dr Code M.D. said " Interview with Dr Bill code You Tube Video and VICI-Initiative Ltd DVD 2011 " and in his book "Who is In Charge Of Your MS?" You Are … So we need to make sure we take control and that means keeping out inaccurate and misleading points of view.It is unfortunate He refers to MS as an illness: it is a state of Ill health but Not a 'Condition' with a capital 'C' but I know Bill is aware of the OVERARCHING role that the circulation plays in this arena.Even 'Venous Insufficiency' which is a state of malfunction but the CONDITION or causal factors are many fold and presentation multifarious.I think 'Blogs' have their place but this one is only valuable in how it reveals the Neurology biased lobby are beavering away to keep a ridiculous and undeserved hold on the VASCULAR FIELD of care instead of COMMUNICATING and working with the IRs and Vascular Surgeons."
"In my opinion Dr Giovannoni is a pure academic with a strong and main interest in merely publishing his ideas whether they be re-inventing the wheel type of time-wasting nonsense or not".Eh…..If you do not like the ideas your choice is not to read them, but they have obviously engaged given the number of comments it has generated."I think 'Blogs' have their place but this one is only valuable in how it reveals the Neurology biased lobby". Well as it is written largely by a neurologists then a neurology bias is not exactly surprising. However if you do not want to hear a neurology centred view you can get your news from "hotwire" etc, etc, etc and read "cure of the week" Happy that we have provided a meeting place for the vascular lobbyists…maybe the next meeting place can be elsewhere.We unfortunately do not provide tea and biscuits. We sometimes supply the rope..it is a shame it people feel they have to tie the knot.
"…maybe the next meeting place can be elsewhere."Second that!
Dementia is a terrible word. There you are, in your mid-late 30s and you turn up with double vision, have an MRI and get a diagnosis (after the usual tests). So, MS, brave people, coping with courage and dignity, hoping to still be walking in their 50s. Dementia. er…I can't think of a single positive adjective to describe life with dementia. If I was that 30-something with a diagnosis of RRMS (or any other type) and the neuro says, 'well yes, you have MS, but you should be aware that it's a form of dementia as well'I'd buy that one-way ticket to Dignitas when my next relapse happens -especially if it's a cognitive relapse.So, what if you have a cognitive relapse, from which you recover well? Is this dementia? So you can't read a book, as you've forgotten what you were reading about by the time you reach the bottom of the page – yet 6 months later, you can do this with ease. If you have RRMS, it's a fluctuating disease. You can feel great and be working well and then you get hit by a relapse and spend 6 months trying to recover and all the while, hoping that you haven't moved into SPMS.It's like rebranding middle-age myopia as 'progressive blindness'. Dementia, to the layman, means insanity, Alzheimers, wandering around in your pyjamas and talking to invisible friends. So, here's a challenge, Prof Mousedoc and Prof G, rebrand 'Dementia' so that the word loses its associations with mental/personality disorder. Can you do this?
Anonymous said Sunday, June 16, 2013 10:50:00 pmAfter 14 years with MS I have reversed my cognitive decline (or dementia if you must), for the past 3 ½ years I been following a low saturated fat diet with omega 3 supplements, vitamin D, meditation, exercise. My memory has improved significantly and I can*figure things out – knitting patterns, sudoku, cryptic crosswords*read a book and follow the plot from one page to the next*add up in my head*participate in conversations*enjoy social situations*fatigue has gone*lots of energy*no longer slur my speechI have improved physically too including my bladder. I have just spent a wonderful weekend away with girl friends and learnt several new board/card/bananascrabble games and even won a couple of rounds. I wouldn’t have even attempted this 3 years ago.LINK REMOVEDOh and my cholesterol has gone down and I have lost 10kg – what doctor could possibly say that is a bad thing?
Sounds to me like you are OVERCOMING MULTIPLE SCLEROSIS! Good for you and how heartening to hear of your excellent progress. Perhaps if more people were able to commit to, and sustain, such a lifestyle choice, Prof G and the Mouse Doctor would neither have to work so hard nor take so much stick for their efforts.Must go now, the ugly sisters are calling.
" In 2008, the central nervous system (CNS) market was the second largest therapy market (after the top-ranked cardiovascular market), totaling $87 billion in worldwide pharmaceutical sales." "Cephalon, a relatively small Pennsylvania company that specializes in pain, cancer and central nervous system drugs, paid physicians nearly $9.3 million in 2009 for speaking and consulting. That figure dropped to $5 million in 2010.AstraZeneca cut its spending on speakers from roughly $22.8 million in the first half of 2010 to about $9.2 million in the second half."Can anyone actually trust their doctor?
Yes, I can!
Well, your doctor separates you from your disease. Who/what is winning so far?
I have ask cui bono? Yes, I can see why you might suggest this but surely there are other ways to do this without adding yet another poorly understood label. I can only guess why, as I'm not privy to the politics of medical research but I do know lots about branding and objectively as a marketing professional as well as personally I don't think this is a good idea. For anyone reading this with MS, I suggest you look at what the Alzheimer's society says about ms and dementia:'Some people with multiple sclerosis (MS) experience a loss of some of their mental abilities if damage caused by the MS occurs in certain parts of the brain. People may be affected to different degrees, and in different ways, over a period of time. The mental abilities most likely to be affected are memory, concentration and problem solving. There may also be emotional problems, such as mood swings.The term 'dementia' is not generally used in association with multiple sclerosis because the decline is not usually as severe as it is in other forms of dementia, such as Alzheimer's disease. It is more usual to describe the person as 'experiencing cognitive difficulties'. For more information contact the MS Society'http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=135A tad less scary perhaps? Yes, it has pretty lousy cognitive impacts, which I'd rather not have, but there are other ways to rebrand without scaring/stressing people with ms. Personally I feel this is a badly exercised PR stunt positing rebranding MS as dementia – best of intentions to shake things up but not thought through as effects such a post will have on people with MS reading this blog or reading it elsewhere. Over the years I've seen many badly thought through attempts with products and services but never before with MS, not counting the hard sells of various pharmas, so please stick with the medical and hire a marketeer for your rebranding ideas.