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  • Is there an over reliance on registrars working in neurology in some hospitals? I wonder how is it decided which patients see a consultant or a registrar? I know there is not always a consultant available but wondered what the average ratio is of registrars to consultants in neurology. I know there are limited resources in the NHS.

    • Dear Anon 10:03. I've had MS my whole adult life. My consultant was referred to by consultants in other teaching hospitals as "Mr MS UK".
      I rarely saw him only on the wards, but when I did, he knew exactly who I was, how I should be treated. Once I had an exacerbation and there was no room in the hospital and I was treated locally with the instructions coming from his team. I saw his Registrars who went on to be eminent Consultants all over the NHS. When some Consultants qualified the NHS didn't have MRI scanners and people stood outside Barts Hospital shaking buckets to raise money to purchase them. It is hard enough becoming a doctor let alone a Neurologist. Registrars have been taught using the latest technology and it is easy to dismiss the Consultants of the future, because they will usually seek a second opinion if they're unsure as Consultants often do. Well that's my experience.

    • Well I'm glad your experience was ok. Now I've had MS quite a few years myself and I'm an experienced pwMS I know what to expect from registrars and consultants. Barts Hospital seems great and if I was to seek a second opinion I would probably contact Barts Hospital.

  • What would the team at barts say how close are we in curing ms for good? 5 years, 10 years etc? For those of suffering from ms what should give us hope and promise? I personally think swing has moved against ms and it's becoming more like a condition that can be managed like diabetes. It's no longer condition that automatically disqualifies you from being a pilot, policeman, etc. Also treatments to repair the damage are just 5-10 years away.

    • I was an UK MS life meeting in Coventry in the early two thousands and they were saying the cure will be here by 2015.

      At the time we thought, this was not wise, and 2015 has been an gone, so if I make any predictions on cure it is simply a rod to be be beaten with.

      Who knows what research will appear tomorrow, I don't that's why I get up with excitement each day and have a read.

      If the cure is something new it needs a trial then we don;t do phase III quickly then 4-5 years at a minimum.

      However, is the long-term NEDA of some people with Lemtrada and HSCT a cure. It could be here already.

      There are treatments that keep some aspects at bay and you are only getting more and more. The American Eagle landed last week, I expect the German Eagle will be landing soon too, Switzerland doesn't have an animal apparently, Maybe it will be a Cockerel. Do we have any Lions left?

      We have studies ongoing or are in the pipeline in neuroprotection, repair and even nerve regeneration, yep regeneration. These ideas were unheard of ten years ago.

      We have to fight to do the best for this generation but we have to ensure that we use our knowledge to ensure that the the next generation does not have to endure the same problems.

      We have to get on this disease as soon as it raises its ugly head, and not take the easy lazy option.

      We need a culture shift in some lazy neurologists, but can you teach an old dog new tricks or should we put them down:0)

      Importantly, you need to be educated so you can shape and challenge your destiny to get the best for yourself, with the current framework, which is where the problems come.

      I predict in landscape of the future will be very different to what it is today.

    • "it's becoming more like a condition that can be managed like diabetes"

      Not if you have PPMS. Neuroprotection and repair required. Or then something for EBV if is finally found to be the original cause.

    • Treatments to repair damage may be 5 or 10 years away. But why are you so sure you would be able to gain access to them?
      This kind of therapy would certainly be anti-aging, and who are we to ask for anti aging drugs or augmentation without having seven digit bank account?

    • Yes but once the know how is out regardless of patents, companies will come offer to offer solutions which are cheaper but do not infringe patterns. For instance b cell depleting ofatumumab! Need drives innovation.

  • Re: "However, is the long-term NEDA of some people with Lemtrada and HSCT a cure. It could be here already."

    A cure can't be merely overwhelming data, it must be definitive science.

    • If people with very early treatment starts developing progressive worsening within 15 years then it is not a cure.

      We don't have the long term data.

      So called benign MS often shows itself years down the line.

    • "So called benign MS often shows itself years down the line."

      Yes..the longest time posted on this board was a man who said he went 47 years until progression kicked in. Second longest
      was a woman who went 36 years.

      Isn't all the NEDA dealing with white matter lesions..or does it look at grey matter lesions/atrophy too.

    • T1 are grey matter lessions (black holes) permanent damage. T2 are white matter lessions. Body can repair

    • Mouse Doctor – if "So called benign MS often shows itself years down the line" why do neurologists not therefore treat benign MS? I have been diagnosed with benign MS and treatment was not been recommended.

  • Did anyone see Dr Aaron Booster youtube answers to Dr Gavin questions on Alemtuzumab in 4 youtube parts? Is so do barts team agree ?

    • I have now,

      It is Dr Aaron Boster (this is a neuros opinion)

      First one Dr Aaron Boster at https://www.youtube.com/watch?v=-OgvttCGJEY

      I need to follow this up, with the suggestion that the authors may not have said what they wanted to say. Why did Prof Coles disappear on sabbatical whilst alemtuzumab was getting approval…gagged from saying something?…unavailbale for questions?

    • I have got wrong end of the stick about being gagged but i expect there was gagging elsewhere too.

    • I've just looked up the Dr Aaron Boster videos and he comes across really well. A guest blogger perhaps?

  • A few years back I had severe pains due to my MS. A very large spider ran across my bedroom floor and for around two hours my pain went completely. I have a fear of spiders. Could this pain relief be due to the adrenaline released? thanks

  • Are VEP's so reliable markers of de/remyelination as they praised in literature concerning remyelination agents and trials?
    I underwent this procedure during diagnosis and some 4-5 months later when went for a second opinion, both times they were abnormal — in both latency and amplitudes. After a year and a half I’ve been suggested to test again (on the same clinic and apparatus I’ve been first time), and than they were completely normal.
    And now they are abnormal back again although, not as abnormal they used to be first two runs.
    The only difference was is that during my normal test I supplemented myself with large quantities of SAMe and cdp-choline to the point where I was able to feel certain amphetamine-like buzz from it. I know that both acetylcholine and dopamine play major role in visual system, but can’t find any studies suggesting drugs can influence VEP’s, instead, all papers state that this is reliable surrogate in remyelination studies, which could not be influenced.
    This situation raises a question for me, whether all those studies concerning regeneration therapies are trustworthy?

    • Latency = myelination amplitude = nerve loss. Well loss of latency is remyelination, return of amplitude means a miracle…or that the test has problems of interpretation.

    • Yep, seen this mantra many times in those papers. But from my personal experience this suff does not look very reliable

  • Do we have any official up to date numbers on malignancies with the newer DMDs out there (Alemtuzemab/Fingolimod/Dimethyl Fumarate/Teriflunomide)? I know your team was able to get PML numbers from Biogen & Novartis. Is it possible to obtain or extract this data as well?

    • Yes, but alemtuzumab trials enrolled patients with very early MS – after 10 years not many are SPMS even without treatment.
      The best predictor for SPMS is age, I am not even sure if time from diagnosis would beat it as a prognostic factor.

  • "2-4%" wow that's a big difference. Would you say those in the 2-4 % where ones who took alemtuzumab in the late stages of the disease, who already had t1 lessions and had used up their neurological reserve?

  • How do neurologists feel about patients (in our case pwMS) audio recording our appointments? Of course we would ask permission first.

    Most smart phones, even basic entry level ones, have an audio recording function.

    It might help us remember what is said, if we have memory issues for example.

  • If this study is correct and has been replicated as that Primary Progressive pwMS stem cells react differently and don't have a capability to repair non-brain damage and also to cause a maturation of protective myelin producing cells.

    This may also be why most DMTs also fail to combat PPMS and can demonstrate that there is something underlying the inflammation in MSPP that can cause each individual to react in a way.


  • "Primary Progressive pwMS stem cells react differently and don't have a capability to repair"

    Could be disease process has as much/or more to do with PPMS as
    lack of brain reserve. Too bad they didn't look at SPMS.

  • I have just received my copy of overcomimg ms by Dr Jenik. Must admit most of the content I have instinctly known or suspected due to.my background in engineering and science. For instance exercise works like a dmd for the following reasons.
    1) causes the nervous system to create new pathways. As ex body builder and all body builders now steps to getting strong is first building new nerve pathways, the muscle etc.
    2) Vitamin d.
    3) vegetable diet. Here I suspect recent findings of cyclotides have shown to stop ms in mouse models and phase 1 clinical trial is becoming next year for capsule called t20. Can barts confirm this why veg diet stops or even reverse ms?
    3) antioxidant. Obvious one.
    Lastly at the back of the book there is a big endorsement by Dr Gavin.

    My question if this so beneficial to ms patients why aren't you endorsing on this blog?

    • Suggest you visit the comments and responses on Unrelated blogger comments from 19th April 2016 (http://multiple-sclerosis-research.blogspot.com/2016/04/unrelated-blogger-comments-april-2016.html)

      I queried the endorsement by Prof G, especially given that OMS is so rigid, and its dietary principles are nothing like those that Prof G has stated he believes in. It is a big disappointment to me that Prof G has endorsed OMS, because despite all its protestations about being so healthy there are some psychologically damaging elements at work amongst the OMS "subscribers", and in some ways it has quite cultish elements within it. Some of its principles (i.e. eat more fruit and veg and avoid highly processed "plastic" food) are entirely sound, but like other specific "lifestyle/diet" approaches to MS the research it uses as its evidence is cherry-picked and anything which does not support its tenets is conveniently ignored. The favourite "Bible" of many OMSers is "The China Study" and that also conveniently ignores any research or studies which don't support its principles.

      Quite apart from anything else, Swank's original study only involved 150 people, and while it lasted over 30 years it pays no heed to possible roles of Vit D etc , and in fact it is possible to follow a Swank diet "perfectly" but still eat unhealthy food.

      Sugar is without doubt a much more dangerous element in today's dietary habits than those named by Prof Jelinek (dairy, red meat, saturated fat) and is covered extremely well in "That Sugar Film" – where many a viewer will suddenly wake up to how unhealthy many "healthy" foods actually are. Additionally, Jacques Perroti covers the subterfuge behind much of the food industry so well in "The Men who made us fat", and those principles are nearly as much at work in things such as OMS, Wahls, etc but just on a smaller more personal scale and on a more specific topic – i.e. MS.

    • Only ProfG can comment, as we have no idea why there was any endorsement.There was no comment either when the book came out.

      I haven't read it, so I cant comment on the content.

    • One diet says no animal produts, another goes to the other extreme recommending organ meat and bone broth, they both seem to improve health though, so it's hard to know which way to turn.
      The one common element is the lack of sugar and processed food. Maybe that is the crux of it all, along with exercise, and we should concentrate on that and not get caught up in strict regimes.

  • What has happened to the list of links on the blog? I often use them to get places of interest. Can you please put them back? Thanks.

    • Mainly the PML app and updates. I use these in my clinic. But the other links are also useful. Our found your list useful as a guide for my patients to use.

  • Based on basic science knowledge, would you expect ampakines (and racetams eg piracetam…) to be neurotoxic in ms, Prof Mouse?

    • Anything that enhances glutamatergic signalling and excitatory stimulation of nerves sounds like a bad idea in MS. All the evidence we have so far is that excitotoxicity may be a significant cause of neuronal death in EAE and presumably MS. All the neuroprotective compounds we have tested so far reduce excitation not enhance it.

    • What is the use?…I suspect not much use in the long term, maybe experimental tools

      This is the link


      Our experience with AMPA receptor blockers are that they are (a) sedative and (b) toxic.

      We could not repeat the early EAE work because the doeses used were killing mice, then we also found that they desensitize the system, which is odd considering we were using an antagonist not an agonist.

      There were trials planned in MS, they never went anywhere I can guess why.

      Anything that hits these systems needs to be weak, because strong binders will be bad news in my opinion.

      Funnily enough I will look for some references of affects in humans if I can find any. I need it for a paper.

    • Eisai were the people who first did the AMPA in EAE in 2001 and this was what we found was toxic…they obviously did develop one drug for epilepsy called Perampanel (sold under the trade name Fycompa).

      It is used in addition to other drugs to treat partial seizures and generalized tonic-clonic seizures for people older than 12 years. It was first approved in 2012. It was the first antiepileptic drug in the class of selective non-competitive antagonist of AMPA receptors.

      The drug label has a black box warning so this is bad news as we guessed. The drug cause may cause serious psychiatric and behavioral changes; it may cause homicidal or suicidal thoughts.Other side effects have included dizziness, somnolence, vertigo, aggression, anger, loss of coordination, blurred vision, irritability, and slurred speech.

      Increased risk of seizures if the drug is quickly withdrawn…so providing evidence what we said about drug induced alterations within the system within the system

      Just what you want if you have MS….not.

    • MD2, my fellow rainbow unicorn (who is certainly not me!) recently was able to lay his hands on one of those "enhancer" compounds and want to say this:
      "Dunno about long term consequences, but effects on alleviating MS brain fog, concentration issues etc are immediate and PROMINENT, even better then with modafinil"
      Unicorn is very sad, that this compound is toxic for him, because it seems to help him a lot :/

  • If Scotland join Canada (Scotland could become Canada's 11th province) then perhaps they could jointly become powerful at researching the cure of MS. As Scotland and Canada have particularly high rates of MS.

    • I don't think the Scots can play hockey well enough to become part of Canada:-) But I would like Scotland to become the 51st state. No wall is necessary.

    • Part of the US? Scotland? No. No thanks. Definitely not. An independent Scotland back in the EU would be preferable by far.

  • Are B cells more damaging than T cells?

    Diabetes type 1 research follows very similar paths to MS research, especially with immune system B & T cells. Diabetes starts with "insulitis" which is inflammation in the pancreas. Eventually the insulin producing cells are affected by the B & T cells and can die off.

    In early 2016 Professor Noel Morgan (See PubMed) reported on T & B cells found in the pancreas of people diagnosed with type 1 diabetes.
    Youngsters diagnosed under the age of 7 had both immune B & T cells in their pancreas, and most of their insulin producing cells had been killed off.
    Those diagnosed after 7 had mainly immune T cells, and although their insulin producing cells stop working, 50% of them became inactive rather than being killed off.

    How similar is this to oligodentrocytes not being able to produce myelin in MS? Is there anything MS research can glean from what seems to be a similar process? Are B cells worse than T cells?

  • I have MS and have had a look through the copies of letters sent from my neurologist to my GP. Other letters from HCP's to my GP and neurologist.

    What has struck me is there are several mistakes with the history taking by the doctors. I am not talking something minor but major aspects left out, misunderstood, misinterpreted or even made up! I look at most of the letters and there are mistakes.

    It makes we think should I be asking the doctors at the appointments to summarise what I have said and read it back to me? So there is less room for mistakes and misunderstanding. Then it can be edited at that point.

    This seems particularly important for first appointments with doctors. Also those with severe symptoms. The correct history taking is very important.

  • I came across a map about countries globally that drink coffee with rates. I wondered how that compares to MS rates. Canada has high MS rates, as with Scotland.

    The world's 20 biggest coffee drinkers (in kg per capita per year)
    Finland – 12
    Norway – 9.9
    Iceland – 9
    Denmark – 8.7
    Netherlands – 8.4
    Sweden – 8.2
    Switzerland – 7.9
    Belgium – 6.8
    Luxembourg – 6.5
    Canada – 6.2
    Bosnia and Herzegovina – 6.1
    Austria – 5.9
    Italy – 5.8
    Slovenia – 5.8
    Brazil – 5.5
    Germany – 5.5
    Greece – 5.4
    France – 5.1
    Croatia – 4.9
    Cyprus – 4.8

    The UK ranking low in coffee consumption is likely due to Brits consumption of tea.
    The UK drinks 1.95 kilograms of tea per person per year, ranking third globally after Turkey and Ireland. (Indy 100)

  • I had an appointment with a neuropsychiatry registrar recently. We were discussing psychological therapies as I wouldn't want to take medication. I said perhaps CAT therapy might be suitable (as in cognitive analytic therapy). He answered "what therapy with real cats?"
    I couldn't help but laugh at his response then I explained what CAT therapy was.
    I thought psychiatrists were supposed to have knowledge of psychological therapies. Oh dear…lol.

  • Interested in hearing your thoughts about the Norwegian life expectancy study: https://multiplesclerosisnewstoday.com/2017/04/18/ms-life-expectancy-survival-rates-analyzed-60-year-norwegian-lognitudinal-study/

    You've posted on the Norwegian study in 2012 and addressed this issue many times.

    I think the updates reported this month are somewhat good news — shows the increasing use of DMTs has had an impact. Perhaps the new emphasis on brain health and diet/lifestyle will help as well.

    • Intention tremor I mean. No ideas? Or am I just consigned to the "should have taken drug x years ago dept."? :op

    • I noticed at lunchtime today for the first time my right hand has a tremor at rest when I hold my arms out.
      This afternoon I went for a long walk and now the tremor has almost gone. I don't know if exercise, the long walk is why the tremor has reduced? I will need to monitor it.

    • Interesting thought, I am monitoring my right hand due to a recent loss of dexterity which I haven't experienced on that side before, I will add exercise in to that to see if it makes a difference.

  • Hello, I was wondering if someone from TeamG or a reader had any opinions on banking cord blood. I have MS and am due to give birth in a few weeks. I am not sure if I should save the baby's cord blood for private use or donate it to a public bank. Is there any potential future use for cord blood in MS?

  • Team G any comments on the following? on the BBC news site.

    Experts excited by brain 'wonder-drug'

    'Scientists hope they have found a drug to stop all neurodegenerative brain diseases, including dementia.'

    'Now two drugs have been found that should have the same protective effect on the brain and are already safely used in people.'

    Prof Mallucci told the BBC News website: "Both were very highly protective and prevented memory deficits, paralysis and dysfunction of brain cells."

    'The best known drug of the pair is trazodone, which is already taken by patients with depression.

    The other, DBM, is being tested in cancer patients. '


    • I'll have a look maybe we can resurface our N acetyle cysteine (affects glutatione) study that we did twenty years ago.

  • We realise that there is a story going around on the "Cause of MS" and in like of last weeks wonderdrug may be hot news, we will report on this shortly. Possibly a guest post…

  • it has come to my attention that Blueteq exists and will actually restrict neurologists from prescribing expensive drugs for MS in some instances where a neurologist previously would have. For example, wheelchair users will be exempt from most treatments regardless of how their MS actually presents and even if the reason they are in the wheelchair is predominantly not MS related. This can also mean that a drug will be stopped despite the patient already receiving it. Is there a team of people arguing this change?

  • Sugar and the brain. I've wondered for a while about this.

    I know the following is about the brain in general rather than MS. To me this indicates too much sugar may not be good for MS brain health.

    "Our findings indicate an association between higher sugary beverage intake and brain atrophy, including lower brain volume and poorer memory," explained corresponding author Matthew Pase, PhD, fellow in the department of neurology at Boston University School of Medicine (BUSM) and investigator at the FHS.

    "We also found that people drinking diet soda daily were almost three times as likely to develop stroke and dementia. "
    Medical News Today 21/04/17.

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