Monday, 1 December 2014

Unrelated Blogger Comments-December

So as we enter the last month  of 2014, if you have any comments unrelated to the posts this is the lace for you. 

95 comments:

  1. I would like more posts about HSCT and specially Dr.Burts MIST trial protocol (redudced conditioning regimen) I'm seriously considering this treatment ...

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    1. when the paper is written we can comment of it

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  2. My comment is about EDSS for ms (extended disability status scale, I think). I know I'm slow on the uptake sometimes, but 18 years after diagnosis, I've only realized in the last week what all the checks that neuros do are for. These checks slot nicely into the EDSS categories such as mobility, cognitive, sight, bladder and they form a quick summary of how the patient is doing. That's why you get certain questions every time and other areas (such as sexual function) don't figure. I don't know what the neuro in the street thinks these summaries are for (I'll discuss this next time) but I think they could serve those of us diagnosed with spms very well - when a treatment offers the hope of improvement of certain symptoms (notice I say WHEN not IF), then we could suggest perhaps that according to the EDSS results it is worth trying it. Wonder what others think?

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    1. Not entirely sure what you mean. One thing I've noticed over the 14 years I've been diagnosed is the EDSS is woefully inadequate, unless you have physical disability of the lower limbs. Even with upper limbs, it is still inadequate. According to the EDSS, I have zero disability. This is far from correct.

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    2. Yup - I agree with Anoymous at 4.36pm - EDSS is pretty useless. My neuro rated me at 3.5 but pretty much ignored the very real problems I have with walking - can only do 150m before I need to rest, which puts me more like 4.5 or thereabouts. Problem is that the EDSS has such a strong focus on walking and lower limbs one you get past a certain number, and seems to ignore the other functional areas once you are in that zone. It needs to be separated out into two "sub-categories" - one for functional systems and another for walking/mobility - only then would the numbers actually be useful and meaningful. In its present form it's very misleading.

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  3. I would like to know about factors that may predict the future course of PPMS

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    1. sex and Age are not good prognostic factors ProfG has posted this before

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  4. MD,

    any thoughts about using these for trials - is there a chance these would be a useful model?

    http://www.newscientist.com/article/dn26639-the-smart-mouse-with-the-halfhuman-brain.html?cmpid=RSS%7CNSNS%7C2012-GLOBAL%7Conline-news#.VHzY4zGsUq9

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  5. BoTox can be useful for spasticity, a paper was done last December I found.
    I am receiving this treatment in both legs for Spasticity. I am still walking with a cane. Treatment s only last 40-50 days, with injections only given every three months. Is there any more research about this type of treatment, or any other useful info on Spasticity in lower limbs with A onabotulism. Botox?

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    1. botox has many uses for temporary paralysis of muscles there are quite a few pozts on the blog.

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  6. Have any studies been done on relapse triggers? My relapses always have a trigger that I can remember. Are neurologists even interested in knowing if a relapse has a trigger and what that trigger is?

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    1. upper respiratory tract infections are linked weeks before the event

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    2. What about a study of progression of MS in relation to pseudo relapses (infection at same time as relapse). My pseudo relapses are often particularly nasty and cause me damage. I can feel my MS has progressed/ worsened after having a pseudo relapse.

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  7. Hello, will you publish results on your Charcoot trial in december?

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  8. Hi MD, MD2 and Professor Giovannoni,

    Does someone with MS need to steer clear of catching the HPV virus?

    Or will our bodies handle it like a normal person would, without any relapses?

    Of course there are no guarantees and everyone is different but just wanted to ask you about a potential MS / HPV link?

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    1. stay clear of all viruses but they is no proof that HPV is linked to MS.

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  9. Apologies if I've missed a post about this, but I couldn't find any search results. What are your thoughts about the trials for indazole chloride?

    http://www.gizmag.com/indazole-chloride-reverses-multiple-sclerosis-symptoms-ms/35020/

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  10. just a common since ? why wouldn't they work harder on pp ms to stop progressing and see results then having all these other meds maybe working, and having the pill company's say they work

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  11. I have a question for MD, I love you cute pics of mice but does this cause any 'cognitive dissonance' as you are also experimenting on them? I'm a life long vegetarian and work in animal welfare and it certainly causes me some difficulties, I've just about reconciled myself to going on a DMT, after 14 years but it is still quite hard to reconcile.

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    1. Both me and MD are both big animal lovers, despite what we do for a living! A long time ago, I rationalised things by taking the stance that if we really want to cure MS or treat symptoms we need a realistic, reliable test system and our mouse model certainly ticks the majority of the boxes in terms of what happens in MS. The mice are looked after to the highest possible standards in the UK but obviously there are those who are ideologically against animal research and we respect that view. We would love not to have to use animals for our research (it would mean I would have weekends off for a purely selfish reason) but MS is a disease involving interactions between the most complicated system in the body (the nervous system) and the second most complicated (the immune system) which it's just not possible to model realistically in a culture dish. If it was we wouldn't bother using animals.
      Having said that, there is a lot of animal work out there that cannot in my opinion be justified but I'm not going to name names here!
      Ultimately, I've met many MSers and seen what this awful disease can do to their lives (and the lives of their families) so unpalatable as it is to some we will continue to do what we do until there is a viable alternative as we strive for better treatments and hopefully a cure one day.
      I guess I take the utilitarian approach.

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    2. Thanks for getting back MD2, yes it is a really difficult situation and the utilitarian approach is perhaps the only thing that one can do. I've never been involved with the animal rights movement, I'm an animal welfarist involved with campaigns and research against some absolutely horrific cruelty to non-human animals (you don't have to name names, I'm sure I may know to whom you refer) and the UK has far higher standards than the majority places in the world, I don't work on UK animal welfare but S.E Asia (totally appalling in some places - on the whole), so it's good to know your mice are looked after to the "highest possible standards in the UK".

      I do understand the need for pragmatism here, and yes, MS is a devastating disease so until there is a viable alternative then there is no choice. For 14 years I've resisted but I'm now too worried that I will become secondary progressive if I don't use a DMT, and then what use would I be to the non-human animals I work to help? But I do feel like a complete hypocrite about this :(.

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    3. Don't feel a hypocrite, we all have choices to make in our lives and in this case for you it's the right one. Regarding your point about standards in the rest of the world, many countries fail miserably on this count. I've rejected papers that I've been given to referee that I consider to be unethical.
      All the best for your campaigning work, it's important.

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    4. I echo the words of MD2 and anybody who works with animals has to deal with their moral dilemas some things we will do some we wont and as MD2 says the UK has some of the highest standards in the world. In the far east I have the misfortune to read some horror stories but these happen. However we all can learn and change practises as animal welfare issues dictate change. In the UK I suspect that welfare issues will cause us to stop EAE eventually in the not too distant future. However work will more to places where it is cheaper and less regulated. Many european pharma have moved their labs east or west

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    5. These are the horror stories read about nearly every day and I've witnessed the horrific after-affects with many of the non-human animals - not just mice -experimented on in parts of Asia. Although in some ways it is improving with more animal welfare standards (predominantly coming about because the populations of these countries are becoming more aware and with rising living standards have more capacity to think beyond the every day poverty they have lived with for so long (doesn't really leave much space to think about other species). But in other ways it is getting worse, and partly this is down to western pharma rapidly moving to these areas, where it is cheaper and as you say less regulated.

      Thanks for getting back, I know it is far from an easy issue to discuss.

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  12. I've been reading the following and wondered Team G's thoughts on:

    A direct correlation has been observed in MSers between level of negative affect, particularly anxiety and the number of helper T lymphocytes.
    However, this observation of higher CD4 cell count in more distressed individuals was not related to severity of MS symptoms rated by neurologists.

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    1. Call me cynical (and many do) but I would suggest that this is an epiphenomenon with little relevance to MS but I'll go and have a read up on the subject.

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    2. I keep thinking about this and that a higher CD4 cell count has been observed in more anxious/ distressed MSers. But for me and some other MSers anxiety triggers a relapse. And a relapse triggered by a combination of stress and anxiety can be quite severe (my own experience).

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  13. Dear Prof G, I'm sure many MSers will back me up on this.. I have had MS for over two years now. I have seen five neurologists (including one MS neurologist) during this time and three MS nurses. Not one of them has warned me of the potential problems that can occur with stress. I find this outstanding as I thought the whole idea was to minimise relapses.
    It's time this needs to be addressed and discussed at MS conferences. MSers are finding out about how stress can effect MS through our own reading, online forums and this blog. Sometimes when it's too late. It should not be this way, we should be warned by neurologists. We would be grateful.


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    1. Sometimes stress causes a relapse and sometimes it doesn't. It is different in all of us. We can only know the trigger ourselves. I was told I might die earlier in the year, no relapse, a relative seriously ill, have a relapse.

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  14. Yes, I agree with the last comment. When I had rrms (15 years approx) no one in the neuro team discussed DMTs with me, or the potential worsening of symptoms which stress may cause. I so wish I had been aware of the (even if only anecdotal,) effect of negative stress - I would have considered doing things differently. Yes, others need to know.

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    1. I saw an MS specialist nurse today. I asked her about relapses and she said anxiety can trigger relapses and is quite common. I knew this already as i've experienced this. But some MSers i've discussed this with refuse to believe it and are adamant that it doesn't.

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    2. No one warned me about stress in MS. It's too late for me my body has taken the full force of stress. I feel like asking if I can do some public speaking on it at Ectrims. The neurologists need to know and understand how damaging stress really can be to an MSer.

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    3. I agree, however, I think anxiety is more problematic than short -term stress, does not have any bad affects for me, chronic stress with anxiety on the other hand really messes me up.

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    4. I noticed on a forum that one MS neurologist is warning patients about stress. I wish my MS neurologist was like this. Warning in the context of advsing the MSer that they should think about changing their job if it is stressful for example. This needs to become the norm and that junior neurologists are educated about the effects/problems of stress and anxiety in MS, and that it is common. To make an effort to make time to discuss stress with MSers, even just for a few minutes. I will raise it with my MS neurologist at my next appointment and ask his view on stress and anxiety in MS.
      The neurologists I have seen when I talk about both stress and anxiety just write it down, no comments made. They don't discuss these which I find very odd. My view is this really needs to change.

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    5. I asked a general neurologist over a year ago if anxiety can cause/ result in lesions, he said no. But if the relapse was triggered by anxiety then it would wouldn't it. May be he hadn't come across before.

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    6. Stress affects all of us in different ways – some good and some bad, and it is no different for MSers than it is for people without MS, or people with other diseases or chronic illnesses. If you can find this Barts blog website you can find other websites with plenty of information about all aspects of MS and living with this crappy disease (including stress). It is a pity if clinicians such as neurologists and other health professionals don’t tell their patients about stress and its possible/potential impacts, but these days the majority of clinicians work in health systems that are overloaded, and don’t get as much time with their patients as either they or the patients would like. Take ownership over your own MS and learn what you can – there is plenty of information out there if you choose to look for it.

      As a starter - this site has some good information:
      http://www.nationalmssociety.org/Search?q=stress&stype=0&chap=0

      And just to get you thinking – as no stress can be as bad as too much stress (even though Wikipedia is not the fount of all wisdom, this is a pretty good article)
      http://en.wikipedia.org/wiki/Eustress

      CoI – I’m a person with MS

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    7. The idea of no stress being bad is debated. Stress I can see is at the root of many diseases. There is information out there but for some MSers finding this information has come too late and perhaps a year of so in from getting their MS diagnosis. I was not well enough to do websearching when I first became unwell with MS, I was unwell and in bed. I had no idea of the connection of stress and MS then.

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    8. If every neurologist told every patient what might happen, there would be no time to deal with the symptoms they're actually having.
      If you are reading this blog you have access to the Internet. People get flu when they're stressed. There was no Internet when I was diagnosed, but it didn't take much working out what stress could do.

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    9. Sady for me my first relaspe was triggered by stress, it was quite severe. Perhaps then the neurologists should just hand the MSer a leaflet about how stress may effect MS, if they have no time to talk about it to the MSer. I would of been happy to have been handed a leaflet on how stress can effect MS. So I was made aware of it and I would of done some things differently.


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    10. The nature of stress is a difficult to pinpoint there is physiological stress that is measurable because we can measure steroids. However emltional stress is a difficult.

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    11. I (an MSer) urge neurologists and MS nurses to warn MSers, CISers and those suspected of possible MS of how stress might effect MS. It only takes a few seconds to say it.
      Prof G's survey indicated 68% of MSers had a relapse triggered by stress. 22% indicated may be. These two totalling 90%. http://multiple-sclerosis-research.blogspot.com/2013/08/survey-results-stress-before-relapses.html

      Before I became unwell with MS my mother has a friend who's husband has MS. My mother already knew about the stress and MS link over ten years ago. This isn't a new discovery yet we (MSers) are kept in the dark about it unless we read about it online. It doesn't make sense to me.
      A neurologist said to me that they can only know our symptoms if we tell them.
      The more MSers report this to their neurologists if this is occuring the better.

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    12. this Is dear to me the stress, anxiety , fever, sun, over doing it , something dramatic years earlier, being in hot tub, if you feel back of neck during its hot, what dose heat do ? it swells I don't know if you can see it in mice brains under this concision but 30-40 years ago they saw in monkey brains that vt d wasn't getting or going where it was so post to go under stress

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  15. Hey you guys! Happy Christmas and all that!

    I've a question. The monoclonal antibodies seem to be just about the most effective treatments around at the moment (aside from HSCT), but they're too large to pass through the blood brain barrier (correct?). I've seen comments on this blog (I think) talking about how, in progressive disease, lymphocytes might have accrued in the brain and be trapped in the CNS - and equally that those same antibodies are either less or completely ineffective in progressive disease.

    Is this because they are too large to get into the CNS, and if so, are there studies where the highly effective treatments (tysabri and alemtuzumab) have been injected intrathecally?

    If so, what was the impact (for both RRMS and Progressive patients). Any more effective that intravenous?

    Thanks!
    Matt

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    1. Hey Matt
      You are correct that in the normal situation antibodies do not get into the central nervous system and are excluded by the blood:brain barrier. However, when the barrier is disrupted, as it is when new lesions occur then antibodies can get into the brain. Yes, lymphocytes do get trapped in the brain but they don't survive for that long after they've done their evil work as the brain gets rid of them, however, the resident microglial cells are activated following inflammation and do persist and as they can secrete toxic factors we think this is responsible for the progressive phase of the disease. As progression seems to be essentially independent of classic inflammation, as shown by us it's not surprising that tysabri or alemtuzumab don't work in this phase of MS.
      Tysabri works by trapping lymphocytes outside the brain and alemtuzumab is a global depleter. As far as I'm aware no-one has delivered these intrathecally but I wouldn't expect either to be effective by this route.
      Hope this answers your questions and a Happy festive season to you and yours!
      Cheers
      MD2

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    2. There are some studies giving anti-B cell antibodies into the CNS. Why? (a) Because there are B cell clusteres in the brain and (b) because in trials with anti-B cells in progressive MS they found that there was some benefit it people with gadolinium lesions where antibody could get into the brain, so the logic is that in the non gadolinium enhancing people then they put antibody into the brain and hey presto the end of progression......I am sorry I don't buy this argument. However the immunology-is-all type of neuro can not let go of the 'T and B cells are everything' and so we will see more failures in SP and PPMS.

      I think we need a different approach.

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  16. Thanks MD1! Do you think immunology-is-all approach can fix RRMS though f treated early enough? In terms of addressing the issue with microglia, I've heard people on some of the forums talking about LDN, and how I blocks TLR4 receptor on microglia to switch off inflammation. Is there anything to this, or is it a load of rubbish/waste of time? https://henotebook.wordpress.com/2010/10/12/what-is-ldn-and-how-does-it-work-for-he/

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    1. Based on studies in the beasties, I think an immunology is all approach can fix the problem, however in reality it would be most sensible to have a belt and braces approach and deal with damage that some anti-immunologicals do not deal with.

      As to LDN there are some reports talking about LDN affecting microglia...however is one of those treatments slipping through the cracks...there is a lot of MSer support for this, but not much action by the neuros and no pharma interest. This is some think the MS Societies should invest in , get an answer to find out if it is good or indifferent.

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    2. Matt - have a read of this comment from Anonymous on Dec 5th at 12.23pm re LDN. It's time for some action on LDN, but Big Pharma sure isn't going to do anything - no profits for them
      http://multiple-sclerosis-research.blogspot.com/2014/12/time-to-changetime-to-repurpose.html?showComment=1417782193521#c2496940413003467273

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  17. My MS has been a slippery slope.
    Glandular fever aged 13
    Healthy until aged 38 (only occasional sleep apnea when stressed) when I have a head injury and migraine. Six weeks later after head injury severe vertigo and sensitive eyes. Was under stress due to house move. Recovered two weeks later. Two months later relapse triggered by infection, very stressed also suffered from anxiety. Stress can make you vulnerable to infection. GP did the Epley treatment, had a hyperextended neck and really hurt neck. Anxiety is bi-directional and can cause stress. Stress can cause anxiety. Had another longer relapse triggered by stress and anxiety, MS goes to spine. The area on my head I had the head injury became very sensitive, had to wash hair using a cup of water in sink. Neck was very stiff and unable to sit in hard chairs for 10 months.
    My body was not able to recover from the head injury, possibly causing white matter lesions and the first bout of vertigo. Sleep apnea possibly causing white matter lesions too (due to hypoxia). From then on slippery slope of accumulating more wml's from infections and stress.


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  18. Hydration and dehydration. Aging aches and pains can be helped substantially with proper hydration I understand and we should be urinating around 7 to 8 times a day. Also that fatigue can come with dehydration and also drinking far too much water. I urinate around 5 or 6 times a day and have back ache and leg ache/ pains. So I will try and drink abit more water and see if this helps me.

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    1. Drinking enough pure water can help the immune system and help flush toxins away.

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  19. Is there any risk/any case reports about the reactivation of latent TB in people taking DMTs for MS?

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  20. Could you please add one (or more) descriptions or definitions of a MS RELAPSE in the Glossary?
    As I find a relapse a very confusing concept. What is the difference between infection and inflammation?

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  21. Hi Mouse Doc,
    I’m again on illicit drugs … after cannabiods isn’t it worth trying 5-ht2a agonists in animal models? Again they looks promising as potent CNS acting anti-inflammatories and there is anecdotatal evidence suggesting of relief in inflammatory conditions like RA, flu, so on, and also nootropic activity. AFAIK some compounds are available for biomedical research in form of radioligands like radio-DOI and radio-LSD. Given the current move to decriminalise and legalise such compounds it becomes a feasible target, isn’t it? Also it looks like that it’s not so hard to synthesise and patent new compound as thousands of them are synthesised literally in basement labs.

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  22. Hey Team G,

    I don't mean to sound like a scratched record re HSCT for MS, but I'm 2 months post-HSCT myself (for RRMS, EDSS 1.5, diagnosed earlier this year), so it's close to my heart.

    I came across this opinion piece on one of the forums, which I thought was very well articulated and quite compelling. I'd really value your thoughts on this; Would you be inclined to agree, or disagree with the views expressed?

    http://tidsskriftet.no/article/3248555/en_GB

    If you do disagree, can I ask on what basis? Not a loaded question, I'm genuinely interested.

    P.S. I have read on the blog that Dr G has some concerns around chemo toxicity (particularly for SPMS), but I believe this was based around results from protocols using TBI and highly toxic chemo regimens, and in those early studies it was almost exclusively used as a late stage salvage treatment. These days, TBI is not used and the conditioning protocol is usually low-intensity (e.g. 200mg/kg cyclophosphamide + 500mg/m2 Rituximab) - and it's being used earlier in the disease course (RRMS with lower disability). Progression free survival at 5 years for early RRMS patients is 90%+, and mortality is <0.5%.

    If similar results are reported in Dr Burt's MIST FDA Phase III trial (and I hear this is what they're sharing with patients currently enrolling), presumably that would put it substantially ahead of Lemtrada and Tysabri as the most effective treatment for RRMS?

    Thoughts?

    Thanks as always!
    Matt

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    1. ill have a look.

      Telling people your treatmemt is working to get people onto the trial is more of a concern. i dont know the tial protocol but would think that it is not. The FDA were critical of lemtrada because the trial was not blinded. If you replace the immune system it would be expected to have maximal effect compared to tinkering with it.

      if the risks of the procedure can be mitigated it will become more popular starting out with one in ten chance that the procedure would kill you was the problem. This risk has dropped alot. However neuros are risk averse so getting some to use lemtrada natalizumab is hard. HSCT is anpther level

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  23. Thanks for the link, it will be interesting to see how use of autologous stem cells play out in MS, will it become more mainstream with the reduction in mortality? If safety can be alleviated the benefit clinically and economically seem to make sense.

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  24. I would be interested to know if any studies have been done (they would have to have been retrospective analyses) on whether people who get MS have a previous history of good health.

    To try and explain - I am one of those people who is generally bypassed by colds, flu, stomach upsets etc while everyone else around me is dropping like flies. I did spend some time as a toddler around 1960 living in what was then a third world country, and thus would have been exposed to far more bugs and viruses etc than most Caucasian people. So, has my immune system got bored with fighting off "ordinary" illnesses and decided to start a bit of an internal "Civil War" which is manifesting itself as MS? I should note that in the nearly ten years that I have had MS symptoms (only diagnosed 12 months ago) I have maintained my status as the one person in my workplace who doesn't get everything else which is "going around" (the only serious illnesses that I can recall having in my life were pneumonia at about 10yo, and Glandular Fever at the age of 16).

    Just curious.................but I do wonder if some retrospective statistical stuff could potentially identify some common threads on possible causes or contributors to people getting MS

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    1. According to the 'hygiene hypothesis", getting exposed to lots of bugs as a child should have reduced the chances of getting MS

      Maybe you just have an overactive immune system that needs to be kept busy and the ordinary illnesses aren't enough. I wonder if that's possible?

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    2. I was the same way. I had brock neck 20 years earlier with no problems after, but agree there's no common since ? asked

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    3. Hah, the hygiene hypothesis didn't really apply to me, I ate a lot of soil (don't ask) as a child and spent as much time as possible swimming in rivers (not necessarily clean ones), climbing trees, building dens and generally getting as dirty as possible. Total tomboy!

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    4. Anon at 10:07 pm - the simplest early theory of the hygiene hypothesis is that the more exposure to the world of "nasties" you get as a child the more effective the immune system is, and that excessive "cleanliness" e.g. antibacterial cleaners and similar which proliferate today are in fact an enemy of developing an effective immune system, and are contributing to the rise in allergies etc. Thus, all of those lovely tomboy activities you were able to enjoy and during which you were exposed to lots of bugs etc should have actually contributed to you developing a good immune system. And - I did all of the same stuff when I was a kid too - I do think there's far too much cotton wool wrapped around today's little 'uns.
      (by the way - what flavour was the soil?)

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  25. Since the price of MS therapies is always a hot button topic I find the pricing of other drugs to be a lesson in global economics. Recently Gilead, the distributors of the Hep C drug Sovaldi, have been questioned on the egregious pricing for the 12 week regimen that promises a cure in 90% of infections. What would be the pricing of a drug that may cure MS? In the U.S. DMTs cost roughly 50K/year or more. If someone is diagnosed at 30 yrs. and is on therapy for decades the cost will be pushing $ 1,000,000 or more. In the developing countries the pricing of solvaldi is $900/12 wks, in the U.S. $84K/12 wks. http://www.forbes.com/sites/theapothecary/2014/06/17/the-sovaldi-tax-gilead-cant-justify-the-price-its-asking-americans-to-pay/

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  26. Please see this: If You Can't Stand On One Leg For 20 Seconds, Here's What It Could Say About Your Brain

    It says "They found that those who struggled to balance for 20 seconds had cerebral small-vessel disease (SVD), even though they weren't exhibiting any classic symptoms. SVD is related to stroke, dementia and even Parkinson's"

    Is this true? Is it related to MS too?

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  27. I don't understand why it is generally understood that MS symptoms are treated non-urgently or even quickly. It can be quite stressful having these symptoms and if you have to wait many weeks to be offered steroids because of needing an MRI or the neurologist deciding treatment is not needed quickly. How can this be fair on the MSer? I've had a relapse before with some quite nasty symptoms that are very stressful (ones that effect the eyes and effected my cognition too).
    I have spoken to people who are not MSers and they find having vertigo stressful and causes anxiety. You know what stress can be like for MSers.

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    1. Time is brain and time to change i believe. If we look at the beasties they have an attack and loose 10-15% of their nerves do something to stop the relapse and these nerves are spared, however if we dont stop the relapses but deal with the consequences of the attack we can save 50-100% of the nerves that would be lost. What we know is that there is a window of opportunity to make this saving and this correlates with blood brain barrier problems. In MS these lesions last 2 to 4 weeks.
      Some of you argue that Team G does nothing however ProfG and colleagues from UCLP has done this experiment.

      Steroids plus placebo or steroids plus nerve saver. So if they can replicate our stuidies in the beasties I will be happy. If not the trolls will no doubt be back

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    2. So this could be a nerve-saving treatment to be given during a relapse?
      Steroids on their own speed up recovery from the relapse, they don't do anything to protect the nerves

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    3. Mouse, Happy Christmas. I have checked the site for over a month. This thread looks the most interesting. However, i'm confused. Are you saying there's a trial which is testing a nerve protecting agent and we may here about the results soon? Is it being trialled on humans? Thanks.

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    4. Yes a trial (NCT01451593) testing a nerve protecting agent in humans. The study has completed and the analysis is being done and results positive or negative are expected in early 2015.

      Go back past a month for more interesting stuff.

      We are also recruiting for another one NCT02104661 which in contrast to clinicaltrials.gov says is "recruiting."

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  28. Article about 'NEDA' in medscape.com
    'NEDA' Measure Predicts MS Disability

    It's the first time I've seen any mention of NEDA outside this blog. Hope it's a signal that the idea is catching on

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  29. This is posted in response to a seven year follow up study from the Harvard MS group.
    They show that despite being on early DMT, 7 years down the line only10% of MSers are NEDA. If this is at the heart of your management of your treatment aim hopefully one can do better.

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    1. Wow - that's a depressing statistic!! Especially given that a proportion of those patients would probably be "benign" and not progress even without treatment (for a limited period at least). Does the paper show any data around how severe or aggressive the disease was in these patients pre treatments, or whether they were on highly effective DMTs as opposed to the first line rubbish?

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  30. Could you please point me in the direction of current research into NF-kappa B in terms of its role in MS pathology and any associated treatments.

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  31. http://www.nytimes.com/2014/12/21/nyregion/sometimes-distance-is-greater-than-miles.html?_r=0
    from NMSS, a little piece on the impact of MS

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  32. More women than men get MS. Could an added risk of aquiring MS be all the beauty products (creams, lotions, make up etc) many women seem to use? All those chemicals we put on our skin, some may be promoted as being 'natural' but what does natural really mean. Many foundation creams have sunblock on them. I used to wear creams on my face and make up. Now I have really cut down on these I wear no make up now, no face creams, I can still look well presented with nice clothes, good shoes and a good hair cut. Coconut oil can be used as hair conditioner.

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    Replies
    1. Dig a little deeper and this is interesting. The United States National Institute of Occupational Safety and Health in 1989 recognized 884 poisonous substances (many synthetically derived from petrochemicals) from a list of 2,983 chemicals used in the fragrance industry that are capable of causing cancer, birth defects, central nervous system disorders, allergic respiratory reactions, skin and eye irritations.

      Many chemicals found in cosmetics don't cause obvious immediate signs of toxicity, but slowly poison us through repeated use.

      Delete
    2. I think profG is concerned about the sunblock. many things we use daily can cause health problemz. If we buy sucrose then we are supposed to use a respirator to handle it according to the health and safety documents.....sugar after all is dangerous .....look at the obesity it causes.

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  33. Hey Team G,

    With 2015 coming up, and in light of the spate of bad news of late, would it be possible for you guys to provide a bit of a summary and timeline for what's next on the MS agenda, in terms of new drugs, trial end dates, interesting new trials, etc., with some commentary on the most hopeful/promising new treatments, preliminary results (if available), and when they're likely to come online?

    Also it would be good to see a summary of the most interesting research programmes currently underway (HSCT, stem cell therapies, neuroprotection trials, remyelination trails, etc.) and the opinions of Team G on which are most promising?

    Basically, what are the next big hope(s) for MS'ers - and how far away? Maybe a bit of a timeline?

    What do you reckon?

    Thanks,
    Matt

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    1. Hi Matt
      Maybe ProfG will put his head on a block as he has done in the past, only to have it removed later in the year, when the predictions are less accurate than Nostradamus.

      In terms of clinical trials. Up and coming results Type "multiple sclerosis" into www.clinicaltrials.gov there are many trials in the pipeline new stem cell therapies will start, new remyelination studies will start, neuroprotection studies will start. However, we have discussed the process and the time it takes, so the only new drugs coming our way will be agents in phase III or finished phase III, unless you participate in a trial.

      There are some new DMT coming, but I guess many people don't want to hear about more drugs for RRMS...but what about progression and repair.

      We will see the results of Gilenya in PPMS....the preliminary word is FAILED; the ASCEND trial will finish and as immunosuppression has consistently failed in MS, I could make a prediction but I won't. We will get more action in the COP wars and the MODwars

      There will be bad news, I suspect some good news too.


      The problem of preliminary data is that in many cases it is not ours, so to spill the beans takes away the glory from others. It also may have impact such that it could allow insider dealing to make a killing on shares.

      The next break through could be tomorrow and the government could may changes so that drugs can be repurposed in a streamlined way.

      We have lots of things to look forward to in 2015.

      Delete
    2. Thanks mouse doc. I am not the person who posted the question above but in a similar vein could you summarize the world of MS over the course of 2014 - new developments, news, drugs etc? There is a lot of frustration and anger that is vented on this blog by some, but there are news advancements all the time. Every new piece of information is a step closer to completing the jigsaw puzzle and I personally am very grateful to the blog and your team for keeping us updated with news, be it good or bad.

      Delete
    3. I am not really the one to do summarising, you always miss stuff out and upset people and what I think is great others don't. This is the type of stuff that ProfG does.

      We have had many new DMT made available and we have played our part in helping develop some of them....sometimes in ways that we can not say. There is more now more choice for RRMSers

      The low points have been the failures of the trials in progression, not least because their failure has killed off many avenues of research, but because we have thrown away potentially valuable therapeutics. Maybe we can resurrect some and here is an International movement to put progressive MS at the top of the pile. A lot of our animal work is being translated for the treatment of humans and look forward to publishing the results in 2015

      I think there has been a lot more insight into remyelination and a number of trials have started or are planned and see this will be on increase.

      2014 has seen the demise of CCSVI

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  34. Thanks MD. Happy new year to you and your family.

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  35. Happy New Year, dear TeamG!
    Wish you to succeed in all your proceedings, both in family, personal and academic.
    Hope the upcoming year will bring new insights and possible the new hope for all of us.

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  36. This comment has been removed by a blog administrator.

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    1. Dear Smith
      While I am glad that you and your hubby are back together again, your posting does not have any relevance to this site,

      However, on behalf of all of us MSers who would like to see a miracle worked and have our MS and all of our symptoms taken away, and all of our neuro-degeneration reversed back to what it was prior to MS arriving to stuff up our lives, you are welcome to contact your spell-caster and ask him to cast a spell to achieve this for all MSers around the world. I'm sure that if it worked and Team G and MS neurologists worldwide were all put out of work as a result, they probably wouldn't mind too much as so much pain and suffering which is greater than a marriage break-up would be removed from this planet. I suspect that Big Pharma wouldn't be so happy though to see so much profit on MS drugs go down the gurgler! Go for it.........

      Delete
  37. PublishDeleteSpam100
    1-1 of 1 newer comments1Older comments

    Dear Smith While I am glad that you and your hubby are back together again, your posting does not have any relevance to this site, However, on behalf of all of us MSers who would like to see a miracle worked and have our MS and all of our symptoms taken away, and all of our neuro-degeneration reversed back to what it was prior to MS arriving to stuff up our lives, you are welcome to contact your spell-caster and ask him to cast a spell to achieve this for all MSers around the world. I'm sure that if it worked and Team G and MS neurologists worldwide were all put out of work as a result, they probably wouldn't mind too much as so much pain and suffering which is greater than a marriage break-up would be removed from this planet. I suspect that Big Pharma wouldn't be so happy though to see so much profit on MS drugs go down the gurgler! Go for it......... on

    ReplyDelete

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