Saturday, 1 November 2014

Unrelated Blogger Comments November

Sometime you want to say something that is unrelated to the posts. This is the spot for you.


Field of poppies London 2014

71 comments:

  1. If MS is caused some how by the EBV/ gandular fever, children of secondary school age being the most commonly vulnerable to the infection. At a time where their bodies are going through changes, hormones and are vulnerable to infections. It would make sense then to focus on this age of people and strengthening and enhancing their immune systems and overall health. Which they can carry on with this knowledge of wellbeing into adult life.
    I noticed recently in a newspaper that some schools are introducing yoga and mindfulness yoga.
    http://www.independent.co.uk/life-style/health-and-families/yoga-in-school-could-it-improve-grades-9783275.html

    In school these days do classes include cooking and eating good nutritious foods? Life skills that some parents may teach older children.

    ReplyDelete
    Replies
    1. On the BBC news website today discusses teenagers suffering from anxiety and treatment is CBT. I'm saddened to see teenagers suffering in this way. I too had anxiety when I was this age. I wish I had known about CBT then, and meditation and yoga.
      http://www.bbc.co.uk/news/health-29954970

      My MS neurologist is good and has offered me CBT for stress and anxiety. I am grateful he understands me.

      Delete
    2. MSCT (Mindfulness based cognitive therapy) where only a part of the course is meditation. It costs around £300 for two hour treatment sessions spanning eight weeks. This is in a group of up to 20 people.
      This webpage discusses meditation must be available on the NHS, says Mental Health Foundation. I really do think neurologists should be offering this or other meditation courses to MSers.

      http://www.mentalhealth.org.uk/our-news/news-archive/2010/2010-01-05/http://www.mentalhealth.org.uk/our-news/news-archive/2010/2010-01-05/

      Delete
    3. MBCT has been known to reduce depression as well as antidepressants. I don't know how much antidepressants costs the NHS but i'm sure they can't be a long term option, health wise and money wise. Meditation reduces anxiety. Anxiety can be severe in MS. Stress can cause problems in MS. Depression is seen in MS.
      I urge neurologists to offer meditation to MSers, if this is not done then this is very unfair on MSers. Aswell as anyone else suffering from anxiety, stress, depression or a combination of these symptoms. I am a MSer.

      Delete
  2. This article argues that the FDA hands out approval for cancer drugs too easily, accepting surrogate measures (tumor size) of effectiveness even when no meaningful outcomes (QOL or survival) are shown. It also talks about the pressure the FDA is under from the public to get drugs on the market as quickly as possible.

    I know this blog's authors and many others who participated in the clinical trials for alemtuzumab feel the drug is very effective. I hear the US approval is perhaps just 2 weeks away. I'm hoping to take it myself.

    But now some part of me wonders if I'm just being overly hopeful. A friend of mine with advanced kidney cancer is, coincidentally, starting the drug in the article, Inlyta, this week. I don't guess I want to share this link with him. But I wonder if I am being equally as desperate taking alemtuzumab.

    http://www.jsonline.com/watchdog/watchdogreports/fda-approves-cancer-drugs-without-proof-theyre-extending-lives-b99348000z1-280437692.html

    ReplyDelete
    Replies
    1. MS and cancer are two different things. The complexity of tumours is mind boggling, not only do they retain some of the features of the originating organ they introduce new and varied ways of establishing their survival. To date one of the biggest contributors to survival is the surgical clearance of the tumour, which then raises the question why an agent which shinks tumour size has no efficacy? Renal cancer is a particularly aggressive tumour and survival of two months more on average tells me the exact opposite, maybe the drug needs to be improved further.

      MS treatment is entering an era of tailored treatments. Agents such as natalizumab and alemtuzumab have high efficacy (we're waiting for the natural history data to tease out their overall impact), but their use will be dependent on the level of risk an MSer is prepared to take. It also dependents on the experience of your clinician. When someone identifies a cure for MS, I predict that the risk of the treatment would be very high.

      Delete
    2. Not all Renal cancers are aggressive they can sit in the body for years without becoming fatal. Also, breast cancer can be treated with drugs and not surgery. The statistics can be misleading. One size doesn't always fit all of us.

      Delete
    3. Thanks for your reply, NDG. These are not easy decisions to make!

      Delete
  3. I have PPMS and sometimes my urine is expelled normally but other times it's like a broken showerhead that sprays everywhere. Is this a common occurrence in MS or is it just me? (I am a bloke, by the way.)

    ReplyDelete
  4. I have had RRMS for two years now and so far I have come to the conclusion that my relapses have a trigger that I am able to think back about. The main trigger being symptomatic infections and secondly stress related. This may change when I start an oral DMT soon. But this is my observation for now. Stress and infections are my enemies but am learning that there are things I can do to help my body.

    ReplyDelete
  5. @ Anon (02/11/14 8:10)

    I have noticed the same thing - up to a few months after every infection I get some sort of relapse. Stress has a similar impact but it's always difficult to measure how stressed you are at any given time point.

    What types of things are you "learning...to help your body", if I may ask?

    ReplyDelete
  6. Team G - thoughts? Appreciate the need for expensive 20 year studies with blinding and controls... But, it's hard to argue with a 100% success rate in stopping Mri, relapse and EDSS progression in all treated patients - lasting at 16 years and counting.

    My question is this; is it now unethical NOT to offer this treatment to early MSers with active disease, given their prognosis long term on DMTs?

    http://lm.facebook.com/l.php?u=http%3A%2F%2Fwww.ottawacitizen.com%2Fhealth%2FHealth%2F8189161%2Fstory.html&h=SAQGjAjZv&enc=AZNpshJdgj6LwQTLl4E0zZ-9UpaJVZwrOQwr2BsYg2sl6MZkox8njkMSH1hHXN_Waeif2rqSHHhjlcySx41Zk2UxW1B6QxhJ658urBKmTTe_pupmjir5EKRBjemwKCRrqKs55L5EH-9UD_aKk-QxJIIv&s=1

    ReplyDelete
  7. The stress: I meditate twice a day. I also practise gentle yoga for ten minutes a day. Both the yoga and the meditation help with reducing stress and anxiety and it's an accumulative effect, so I make sure I do these every day. I aim to be asleep at bedtime by 10pm so go to bed for 9.30pm. This may seem early at first but it's a good way for me to get between eight and ten hours sleep a night. I really do feel better if I go to bed early.

    Infections: I seem to get quite a few ear infections that lead to different cranial nerve palsy's. It may be something to do with the shape of my ears as my mother has similar shaped ears and she used to get ear infections when she was young (she doesn't have MS).
    I help this by wearing swimmers ear plugs for having a shower and washing my hair. What seemed to happen in the past is water would get in my ears, not dry out quick/well enough and bacteria would get in, causing the ear infection. The blast of warm air from a hair dryer normally helps dry the ears.
    I won't go outside until after 30 mins after i've had a shower.
    I used to rub my eyes alot with my fingers and now I am aware that this and touching my nose can cause infections. I try not to rub my eyes now, if I really need to its with the backs of my fingers. I use a clean facecloth each day to wash my face and wash away sleep dust on my eyes, so my eyes don't itch.
    I am borderline underweight and understand I am more vulnerable to infections so I am trying to increase why weight to help this and be more healthy.

    ReplyDelete
    Replies
    1. Anything that you put in your ears such as in-ear headphones and hearing aids may carry bacteria. I use in-ear headphones to play my digital piano and listen also to music. I wipe the earphones wih a disposable antibacterial wipe before I use them. I am also going to change these to over-ear headphones.

      If I use swimmers ear plugs these need to be washed in warm soapy water after each use, then rised in clean water. Then dried with a paper towel.

      Delete
  8. Do you have any ideas for boosting/increasing immunity? As infections can trigger relapses. Thanks very much. Vitamin C and Vitamin D on the list. Echinacea may increase MS activity.

    ReplyDelete
    Replies
    1. Garlic! Not only useful for warding off vampires but also great to fight cold and flu. Chop up a clove, wait 10 minutes then munch. Green tea, ginger, chili, tumeric and Manila honey all help too without sending your immune system into a tailspin. And if you can, I find walking in all weather, really works. I rarely get an infection, and usually knock it on its head in 24 hours using the above :)

      Delete
    2. Oops Manuka honey, damn tablet auto-spellcheck. Also check Tulsi tea, fantastic for stress relief and apparently an immune booster. All the above can be checked via pub med. I'm a great believer in Hippocrates alleged saying on 'let food be thy medicine.' Where possible!

      Delete
    3. Fight or flight response lowers immunity. Stress goes up immune system down. Anything that can break this cycle such as meditation.

      Delete
    4. "Garlic! Not only useful for warding off vampires but also great to fight cold and flu."

      Maybe Holy Water would cure MS, the common cold as well as ward-off Dracula.

      Delete
  9. MD, there are many neurotrophic factors identified such is NGF, BDNF, neurotrophins etc, which are shown to improve neuronal survival. Why they are not used directly in progression, e.g. I see the inducers for the production of some of them found also?
    Lame question but still curious

    ReplyDelete
    Replies
    1. Straight answer is I don't know. It depends on pharma interest.

      (a) However the problem of using cytokines to treat brain problems is do the proteins (cytokines) actually get into the brain. Many proteins cannot get into the brain because of blood brain barrier issues.

      (b) If you increase a cytokine what changes to compensate for this is it a good thing or a bad thing.

      (c) What else does the cytokine do. Cytokines have more than one function and so may help nerves survive, but do other things, so BDNF can affect immune function but it has also been reported to induce spasticity so whilst it may do one good thing it can do bad things too

      Delete
    2. Thanks for the clarification, Prof Mouse.

      Delete
    3. Found this
      http://www.neurology.org/content/82/10_Supplement/P3.155.short
      Pilot Trial Of Recombinant Human Growth Hormone For Remyelination In Multiple Sclerosis: Current Status And Preliminary Safety Analysis (P3.155)

      IGF-I instructs multipotent adult neural progenitor cells to become oligodendrocytes.
      http://www.ncbi.nlm.nih.gov/pubmed/14709544

      Delete
  10. Could you please comment on this publication:

    Shahijanian F1, Parnell GP, McKay FC, Gatt PN, Shojoei M, O'Connor KS, Schibeci SD, Brilot F, Liddle C, Batten M; ANZgene Multiple Sclerosis Genetics Consortium, Stewart GJ, Booth DR.
    The CYP27B1 variant associated with an increased risk of autoimmune disease is underexpressed in tolerizing dendritic cells.
    Hum Mol Genet. 2014 Mar 15;23(6):1425-34. doi: 10.1093/hmg/ddt529. Epub 2013 Oct 24.

    Would a transfusion with normal tolerogenic (DC2) be possible?

    Thanks

    ReplyDelete
    Replies
    1. if you can purifty enough cells things are possible, however not everyone accepts that cyp27b1 is a risk factor

      Delete
    2. Dear MouseDoctor
      Oops - typo alert - do you mean "purify" or "putrify"???

      Delete
  11. I'm having a difficult time as my journey into finding out I had MS was very truamatic. It began with an ear infection in my left ear. I visited the GP three times for vertigo caused by the ear infection. I forgot about the ear infection and he never asked me if I had ear symptoms, he never checked my ears or offered me antibiotics. Then double vision developed. The GP assumed my double vision was part of BPPV. I didn't now at this point GP's make mistakes. The GP referred me as non-urgent to the hospital. It should have been same day referral as there should be no double vision in BPPV.

    I got to see Neurology 17 days later. Then the registrar doesn't ask me enough questions. I told him I was very stressed. By this point I still didn't remember my ear infection. He doesn't ask me if I've had a recent infection. He doesn't ask me if i'm sleeping ok. I didn't know I had MS and it would be important to tell him the reason for my severe stress and how long I had had it for. He doesn't ask me asbout my severe stress. He keep's saying "anything else" to me. I had no neurology knowledge then so how would I know what is relevant and isn't relevant? He should of asked me more questions and got his supervisior to examine me and ask me questions. Then when I go back to that hospital for my follow up the second registrar says to me " you did have blurred vision didn't you?" I accidently said yes instread of no. I had transverse myelitis in my arms, he says to me "not so good hey" when I do the right and left hand nose to finger examination. He writes no medical examination notes and the letter he writes to my GP doesn't state the TM. I get turned down for DLA. I suspect me saying yes to the blurred vision confused him and he may have suspected TM is only a symptom of ADEM. The significance of blurred vision. I've not had blurred vision before. I get diagnosed with possible MS. I do have a full TM lesion in my C spine. My MS has advanced about 15 years due to the mistakes the GP make, the mistake the first registrar made, my lack of awareness. The first regisitrar should of admitted me straight away or told me to leave the stressful environment straightaway/ that day. As stress and MS do not mix well. I am truley gutted that I didn't get a second opinion after seeing all three medical professionals. Its taken me this long to work out what happened to me. So yes stress definately triggers MS relapses and GP's often make mistakes - Beware.

    ReplyDelete
    Replies
    1. I sympathise with you - what I now know to be the earliest symptoms of my MS were patches of short-lasting dizziness, vertigo, and balance/proprioception problems, with some nystagmus - the ENT specialist I was referred to also told me that it was probably BPPV - however the symptoms had subsided by the time I waited 3 months to see him, and the symptoms I described to him did not match BPPV symptoms at all. I had never had an ear infection in my life but a couple of years later did get what the GP said was an ear infection. This subsequently resolved into classic BPPV – and one of the hardest things I found on the road to eventual diagnosis of MS was trying to get doctors to understand that the problems I had with BPPV and the other "type" of dizziness I had were completely different. I also described to several GPs the problems I was having with worsening weak and uncoordinated legs, but none referred me on to a neurologist until things became so bad that I asked for a referral.

      However, do try to remember that MS has a lot of mimics out there, is often so different in presentation for each person, and we are told that diagnosis is sometimes as much a case of eliminating the other possible causes as anything else. Doctors are human too - they are not infallible – and I had two neurologists tell me that it was extremely unlikely that I had MS as I didn’t fit the “profile” – until the second one had an MRI done (which was only last year). Save your energy for dealing with what you now know about, rather than wasting it being angry about the past – which just further increases your stress levels. And blaming yourself for not having enough knowledge, or saying “Yes” when you wanted to say said “No” won’t achieve anything either, unless there is clear evidence of medical negligence on the part of the doctors.

      The old “split milk” cliché applies – it’s definitely not easy to move on from the past, and I still struggle with this, but I can’t change what’s happened – I can only try and conserve my energy for dealing with what the future holds – which is hard as over the eight years since my first symptoms appeared my MS has now resulted in permanent disability which has significantly affected my life and working future. All the best with your own MS journey –do try to the share the driving and don’t just be a passenger.

      Delete
    2. Thanks. There is cear medical negligence on part of all three doctors. I am telling my storey so neurologists understand stress is very dangerous in MS, especially severe ongoing stress. Neurologists have known for years there is a relaotinship between stress and MS and it has taken someone like me to tell my storey and escalate my complaint of all three doctors. I am unable to work. I know now how stess effects MS and I considering researching into it at university, albeit it will be very part time. People with MS needed to be aware of how stress effects MS and be proactive at minimising it as much as possible.

      Delete
    3. I think most people with MS already know how MS is affected by stress (just do a cursory search on this blog or google to see) and are being proactive about minimising it. I could tell you an equally crap story about my diagnosis and bemoan the many MS specialists I saw who got it wrong (they're only human and humans' make mistakes) but as anonymous at 2.26 says, there is no point crying over split milk. Apologies if I don't sound sympathetic, I am but there are many ways of looking at a situation and dealing with it, sometimes to reduce stress you have to let it go :). For me, it was no surprise when I finally was diagnosed, so perhaps I missed the angry step in the grieving process. And resolving when I was diagnosed that I wasn't going to let MS beat me. And that is a state of mind:)

      Delete
    4. But the thing is I didn't know I had MS at the time when I saw the first registrar. He should of asked me more questions. It was very very severe my relapse. And it was avoidable. If only the GP referred me as same day urgent to the hospital 17 days earlier and I got to see a consultant neurologist, not registrar. I hope they would have asked the infection and sleeping ok questons. I would of said no the sleeping ok question. If the neurologist asked me is that also the cause of my severe stress and I said yes. Then hopefully he would admitted me straight away or told me to leave the stressful environment. Its ok I meditate twice a day now and am very aware of stress but it is too late the damage is done to my body. I saw a psychiatrist a month ago and he was suprised. It's the neurologists that need to look at stress in a more holistic way. To ask questions about the stress if it's mentioned by the MSer. If I had been introduced to my MS with a numb foot or something and no stress at the same time I would have read the blog about stress. I learned about stress and MS the very very hard way.

      Delete
    5. Re “But the thing is I didn’t know I had MS at the time when I saw the first registrar”.
      More from Anonymous at 2.26am - The reason we go to see a neurologist is because we don’t know what is wrong with us (although some of us may have our suspicions).

      I had in previous appointments with my GP mentioned a concern about MS, as my symptoms matched what little I knew about MS, but with no identifiable relapses there was not seen to be any urgency about my problems, and no action was taken until things were quite bad in relation to leg functioning and fatigue. Yes – I could have jumped onto the internet and scared myself silly with worry – but I didn’t. Maybe if I had done so, I might have pushed harder for a referral to an appropriate specialist, and might not be in the situation I am in today – I could have accessed medication/s which may have limited the damage. But I didn’t – and I’m not going to endlessly beat myself up about it – to do so would only increase my stress levels and there is nothing positive to be gained if this happens. I am where I am right now and that is what I have to deal with going forward. And my stress levels were off the Richter scale from a heap of major life events I had no control over during a two year period when my symptoms were just getting worse and worse.

      There are so many of us that have very long, difficult and painful roads to diagnosis (especially if you do not have acute episodes or relapses), so you are not alone in this but at least you now know what you are dealing with instead of still facing a great unknown. And like Anonymous at 2.20pm, I was also not surprised to receive an MS diagnosis, despite both neurologists telling me it was extremely unlikely, even though I had a very experienced neuro-physiotherapist’s report indicating that my problems were neurological, and not a manifestation of depression as the first neurologist had suggested as one of his options. I had to wait four months (yes – months) between having my first MRI and finally seeing the second neurologist again to get the formal MS diagnosis – and all the while being in possession of a radiologist’s MRI report which stated that the multiple lesions in my cervical and thoracic spine and brain were compatible with MS. Even worse – I had sent a copy to the neurologist within a few days of me getting the report. In hindsight, I could have jumped up and down and got angry that no suggestions or offers were put forward that another neurologist could/should have stepped into the breach so that I could start on medication, but in a health system which is stretched to breaking point, it would not have achieved anything much except even more stress for me.

      So, do your best to move forward – you do have some control over what happens in the future, and are taking good steps with your meditation to help with your stress levels.

      Delete
  12. Rebranding MS as a dementia:

    Could a diet with added nitrates (such as beetroot) help slow down the dementia process?

    Small study conducted.
    http://www.nhs.uk/news/2010/11November/Pages/beetroot-and-dementia.aspx

    The researchers say poor blood flow and a restricted oxygen supply (hypoxia) around the body are causal factors in many health conditions and may be related to the decline in physical and cognitive function as people age. Previous research has shown that the chemical nitrite can widen blood vessels and increase blood flow and, as a result, it is being studied as a possible therapy for a wide variety of diseases.

    Levels of nitrite in the blood can be increased by eating foods high in nitrate, such as beetroot, as nitrates are converted into nitrites in the body. The researchers maintain that nitrite has been found to have health benefits including a reduction in blood pressure, improvements in gut health and better exercise performance. This suggests that dietary nitrate could help in conditions caused by reduced blood flow, including dementia and cognitive decline.

    The researchers also point out that a major feature of nitrite’s ability to increase blood flow is that in conditions caused by hypoxia, it increases blood flow in the areas where oxygen is needed most.

    ReplyDelete
    Replies
    1. Alas I wish it was that simple, the year my veg box contained more beetroot that I knew what to do with (beetroot cake, beetroot risotto, beetroot bread etc etc) would have paid off but I don't think a diet rich in nitrates is a good thing for MS. Do a search on pubmed to see what I mean. Frankly, I'd be overjoyed if this wasn't true as I had enough of beetroot for a life time :)

      Delete
    2. Ooooh Kidney stones!

      Delete
  13. EMA FIRST TO TAKE ACTION:

    PRAC
    Pharmacovigilance Risk Assessment Committee: the committee that is responsible for assessing all aspects of the risk management of medicines for human use.

    For more information, see Pharmacovigilance Risk Assessment Committee (PRAC).

    advises informing about first case of PML in a patient treated with Tecfidera

    The PRAC has discussed a fatal case of progressive multifocal leukoencephalopathy (PML) which was reported in a patient treated with Tecfidera (dimethyl fumarate), a medicine used for relapsing-remitting multiple sclerosis. This is the first case of PML, a rare viral brain infection with symptoms that can be similar to those of a multiple sclerosis attack, to be reported in association with Tecfidera.

    The fatal case of PML occurred after long-term treatment with the medicine in a patient experiencing severe long-term lymphopenia, a known possible side effect of Tecfidera.

    The PRAC recommended that healthcare professionals and patients be informed and considered that there should be further evaluation of this case.

    link: http://www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/2014/11/news_detail_002206.jsp&mid=WC0b01ac058004d5c1

    ReplyDelete
  14. I've heard HSCT has now been approved as a treatment in Norway. Good news for many.

    ReplyDelete
  15. Are stress triggered relapses different to infection triggered relapses? With regards to particular symptoms. I had peripheral nervous system symptoms and autonomic nervous system symptoms from my stress triggered relapse.

    Are the lesions difffferent any anyway, for eample shape? Do stress or infection triggered relapse lesions heal and remyelinate better? May be MS lesions from infections do as in ADEM the lesions from the infections remyelinate generally partially or fully. All questions for future reseach.

    ReplyDelete
  16. "Stupid virus" in the news today - apparently reporting on legitimately looking PNAS publication:
    http://www.pnas.org/content/111/45/16106.abstract
    40 % human subjects carry this virus, which effects brain function.
    The corresponding author has been working on these chlorella viruses for a while:
    http://ncv.unl.edu/vanettenlab/
    Interestingly, the virus has some common features with potassium channels (unconfirmed potassium channel antibodies found in 40 % MSers comes to mind...)
    Of course, all this is pure speculation.

    ReplyDelete
  17. I am a RRMSer and had body wide fasciculatons (twitching) for many months. Not that many spasms. Up to around 30 a day a one point. Tiny twitches on the legs, arms, back, shoulders not on my chest though. Does this mean anything specific?

    ReplyDelete
    Replies
    1. I have no idea if this means anything specific or not, but I also had plenty of what you refer to as fasciculations - mostly with my lower legs/calf muscles and very tiny ones around my face, would come and go a bit but generally most consistent most days. Also had a lot of bad foot and lower leg spasms - a painful daily occurrence. I have had a few much less severe foot spasms at times in the past and before starting on interferon treatment, but have now stopped the interferon - and got the shock of my life when both spasms and twitching almost completely disappeared within a few days - have not had a spasm for weeks now - just a few minor twinges.

      Delete
    2. I asked a GP about fasciculations in MS, she said it is sometimes seen in MSers who have been diagnosed for many years. I think mine was connected with severity of relapse, it was severe.

      Delete
  18. I have 2 questions for Team G...

    1) If I present to a neurologist with optic neuritis (having had similar symptoms one year earlier which went undiagnosed) and Uhthoffs Sign (vision deteriorates massively with increase in body emp), tremblig/tingling in my hands and fingers, and muscle spams in my back and neck, and a subsequent MRI shows 1-2 lesions on my brain, am I potentially entitled to start on DMTs? Or would I not qualify?

    2) 2nd question; If you take DMTs at the point of CIS, are there any studies which demonstrate this can i) prevent or ii) delay transiton to clinically demonstrated MS, and do the NHS/NICE recognise and accept these studies?

    ReplyDelete
  19. Can I ask your opinion on something. Following visual symptoms (which later turned out to be optic neuritis) I had an MRI which was reported as clear of MRI lesions, and no signs of optic neuritis or MS. Some months later, I was diagnosed by a different doctor as having ON and MS, having developed 8 new lesions.

    The radiologist retrospecitively reviewed the initial MRI and reported that it was not clear, and had been misreported (there were in fact 2 lesions present).

    Do you consider this to be clinical negligence, and if it had been reported correctly would early intervention at the point of CIS potentially have prevente the transition from CIS to MS, or at least have allowed access to DMTs that could have prevented such progression (8 new lesions in 12 months)?

    ReplyDelete
    Replies
    1. Firstly - I am not a member of Team G - I live on the other side of the world, I am not a medical practitioner, so I do not have a "vested" interest in in defending anyone, and I do not wish to belittle your experience.

      Regarding the original report on your first MRI - any questions about possible medical negligence in relation to this should be asked of a lawyer with knowledge of this area of the law in your own country. And if you search this blog there are plenty of posts about use of DMTs in CIS.

      Delete
    2. The radiologists can only report on what they see. I've had four cancers that were not thought to be malignant, but they were. I knew there was something wrong. I'm still here, but lessons were learnt without litigation.

      Delete
  20. Evolution of multiple sclerosis in France since the beginning of hepatitis B vaccination.
    http://www.ncbi.nlm.nih.gov/pubmed/25395338

    ReplyDelete
  21. Any thoughts on the new Laquinimod study för progressive MS ( ARPEGGIO)? The primary endpoint is " Percent brain volume change (PBVC) [ Time Frame: 48 weeks ] ". I guess it is easier to show brain atrophy improvement over disability/EDSS since brain atrophy is a leading indicator for coming EDSS and cognition deterioration.

    Since there are no available treatments ( with a label saying the DMT have effect and can be prescribed for PPMS / SPMS ), is it likely that Laquinimod can be considered an orphan drug ( and be approved ) and therefore be approved in case the brain atrophy data in ARPEGGIO is good enough?

    I read a recent post at this blog with Professor G's thoughts about the Tysabri and Gilenya studies in progressive MS. As I understand #1: they both have disability progression as primary endpoint = more difficult to show than effect on brain atrophy; #2: at least the Gilenya study is not placbo controlled. Any thoughts about the study design and what can actually be interpreted from the Gilenya results ( with no placebo to compare with ).

    Hope you can help with some feedback on this.

    ReplyDelete
    Replies
    1. Credit suisse yesterday published an interesting report on the evolving landscape for Progressive forms of MS. They are of the opinion that " The Gilenya INFORMS trial has a very challenging disability endpoint. We conclude that data can be ‘positive’ and
      commercially relevant even if the trial fails to meet the primary EDSS endpoint. "

      Some additional arguments in the Credit suisse report about good Gilenya data on brain atrophy/MRI in RRMS (and that same is expected in PPMS), leads to my conclusion that it is likely that ARPEGGIO has quite good odds to succeed on its Primary endpoint.

      The financial view from Credit Suisse is that the PPMS market potential is $7B

      Delete
    2. Lets wait until the results are announced by the trial organisers before we get too carried away.

      Delete
  22. Dr. G have you seen this study, any thoughts?

    JAMA Neurol. 2014 Oct 1;71(10):1275-81. doi: 10.1001/jamaneurol.2014.1668.
    Impaired cerebrovascular reactivity in multiple sclerosis.
    Marshall O1, Lu H2, Brisset JC1, Xu F2, Liu P2, Herbert J3, Grossman RI1, Ge Y1.
    Author information
    Abstract
    IMPORTANCE:

    Cerebrovascular reactivity (CVR) is an inherent indicator of the dilatory capacity of cerebral arterioles for a vasomotor stimulus for maintaining a spontaneous and instant increase of cerebral blood flow (CBF) in response to neural activation. The integrity of this mechanism is essential to preserving healthy neurovascular coupling; however, to our knowledge, no studies have investigated whether there are CVR abnormalities in multiple sclerosis (MS).
    OBJECTIVE:

    To use hypercapnic perfusion magnetic resonance imaging to assess CVR impairment in patients with MS.
    DESIGN, SETTING, AND PARTICIPANTS:

    A total of 19 healthy volunteers and 19 patients with MS underwent perfusion magnetic resonance imaging based on pseudocontinuous arterial spin labeling to measure CBF at normocapnia (ie, breathing room air) and hypercapnia. The hypercapnia condition is achieved by breathing 5% carbon dioxide gas mixture, which is a potent vasodilator causing an increase of CBF.
    MAIN OUTCOMES AND MEASURES:

    Cerebrovascular reactivity was calculated as the percent increase of normocapnic to hypercapnic CBF normalized by the change in end-tidal carbon dioxide, which was recorded during both conditions. Group analysis was performed for regional and global CVR comparison between patients and controls. Regression analysis was also performed between CVR values, lesion load, and brain atrophy measures in patients with MS.
    RESULTS:

    A significant decrease of mean (SD) global gray matter CVR was found in patients with MS (3.56 [0.81]) compared with healthy controls (5.08 [1.56]; P = .001). Voxel-by-voxel analysis showed diffuse reduction of CVR in multiple regions of patients with MS. There was a significant negative correlation between gray matter CVR and lesion volume (R = 0.6, P = .004) and a significant positive correlation between global gray matter CVR and gray matter atrophy index (R = 0.5, P = .03).
    CONCLUSIONS AND RELEVANCE:

    Our quantitative imaging findings suggest impairment in functional cerebrovascular pathophysiology, by measuring a diffuse decrease in CVR, which may be the underlying cause of neurodegeneration in MS.

    ReplyDelete
  23. Progressive MS webinar by MSIF Multiple Sclerosis International Federation on Thursday 27th Novmeber 5.30pm to 6.30pm GMT.
    With research scientists, Professor Alan Thompson and Dr Olga Ciccarelli and two MSIF presenters.
    To register for webinar or to watch later here's the weblink.
    http://msif.e-activist.com/ea-action/action?ea.client.id=1906&ea.campaign.id=32837&ea.url.id=317748&forwarded=true

    ReplyDelete
  24. I’m seeking some help from either Team G members or any other contributor to this blog who can assist, or at least point me in the right direction to find the information I need (ASAP…)

    I’m due for a review appointment with the neurologist in a couple of weeks, and need to get some blood tests done beforehand. Next MRI will not be for at least 6 months, and I recently stopped interferon treatment due to endless and ongoing problems with side effects.

    The tests that I know need to be done include full blood count (check if platelets etc have returned to my usual levels), liver function (to see if this has returned to normal) and a re-check of Vit D3 levels.

    However, what I cannot find anywhere is information on what tests should be done to check if my inflammation levels have increased since stopping the interferon. I know that ESR is one, but should ordinary CRP be checked, or should it be High Sensitivity CRP? (ESR & ordinary CRP were nice and low a few months ago when I was still on interferon) What other inflammatory markers, if any, should be checked to see if there is ongoing underlying inflammation? As I do not have defined relapses, I would like to discuss with the neurologist what my options are if inflammatory processes have either re-started or are ongoing and are likely to cause ongoing progression/increase in disability etc. But before I can discuss this with him I need to find out about what is happening in the inflammation “department”.

    Please don’t advise me to be guided by my GP, as she has little experience of MS, and we are generally making joint decisions, partly guided by the wonderful information that this blog provides.

    None of the MS websites offer this “monitoring” type of information (and nor does the new NICE guidelines), which is why I’m appealing to contributors to this blog – so hopefully I can say “Thank you” in advance.

    ReplyDelete
    Replies
    1. Unfortunately none of the standard available blood tests are useful for monitoring any inflammation in MS. Someone will hopefully correct me if I'm wrong but some of the more useful measures in MS in CSF and blood seem to only change in response to later/more severe degrees of progressive disease.

      It would be fantastic if a useful blood marker could be found as it would perhaps help guide treatment choices for individual people.

      Delete
    2. Re: blood markers of inflammation.

      MSers do have blood markers that correlate with MRI activity. The most well studied is the plasma MMP-9-TIMP-1 ratio. The problem is that this biomarker has never been validated in clinical trials and hence has not entered clinical practice.

      Delete
    3. I'm somewhat confused about MRI activity - I thought that neurological damage could still be occurring without an MRI showing any changes i.e. symptoms still get worse and disability increases despite there not being any changes or increase in lesions numbers/size visible on the MRI? My last MRI report 6 months ago said "no change", but my symptoms are worse and my disability has increased in the past 12 months - I am actually quite a lot worse than I was 12 months ago. (neither of the MRIs that I have had used Gadolinium - and I'm not sure exactly what that is used for either).

      Any chance of a Clinic Speak or Education post explaining MRIs and what it all means in simple language for us non medical MSers? Everything else I find on the web is either written in techno-babble which I need a degree to understand (unfortunately my degree is not in medicine), or is only about six lines long on one of the MS organisational websites - something in between would be really useful........

      Delete
  25. I have a question about sexual intercourse and bladder problems.
    When I eventually manage to reach a climax (I'm female) my bladder releases about 100 ml of urine.
    I had a uterine prolapse in 1992 and had my pelvic ligaments tightened and my bladder lifted and attached to the pelvis. I have no continence problems - or urinary retention.
    This seems to be a nerve problem, maybe a conduction or misfiring? I have no sensation of releasing urine during climax.
    This has discouraged my from attempting any sexual arousal at all.
    Is this a common problem with MS (diagnosed 2000). I'm still able to walk and work well and I'm on Rebif (since diagnosis in 2000) and Fampyra and a few other drugs (amitriptyline, BP meds).
    The Fampyra has been a miracle. I was able to go back to work as a result.
    Any suggestions on this would be most appreciated. I do think that I'm stuck with this problem of urinary emission during climax. It sucks.

    ReplyDelete
  26. Just heard the latest news on dementia and schizophrenia on BBC radio4 and also here on the BBC website http://www.bbc.co.uk/news/health-30180804. Can this in anyway help or relate with MS cognitive changes and dementia?

    ReplyDelete
  27. I went to the hospital today and was talking to the doctor (not a neurologist) about MS and relapses. He said anxiety can trigger relapses. I've heard this mentioned before and also that anxiety can make MS symptoms worse. I know stress is known to trigger relapses but I wonder what the mechanism is for anxiety triggering relapses?
    I've had anxiety with vertigo before, I think anyone with vertigo would be anxious. Anxiety is like a vicious circle and I know stress can cause anxiety.

    ReplyDelete
  28. This is something that i'm sure has been covered many times: MS is not exclusively the result of a sexually transmitted infection. But people with a vulnerable genetic make-up may develop the disease following infection with a sexually transmitted agent? I mention this because I know that a male was in a long term relationship with a female MSer. The relationship ended and the male met a new female partner, this new partner was diagnosed with MS sometime after this relationship began. Could be just a coincidence of course and I expect it is.

    ReplyDelete
    Replies
    1. Let's not do anything to encourage Chris Hawkes, whose paper postulating this caused a lot of distress around the world.

      Delete
    2. Ha. My boyfriend's wife had bad MS for a long time and then died. After we started dating, I was diagnosed with MS. What are the odds, huh? I can attest that my first symptom, which came after we met, occurred a year before we ever had sex. I was diagnosed some years later. So, my case doesn't support the STD hypothesis. My theory is that he is attracted to some characteristic that signals smoldering MS.

      On the plus side, no superstitious woman will ever try to steal him away from me now.

      Delete
  29. Am I correct in saying that DMT's help reduce relapses triggered by viruses but are less help in reducing relapses triggered by bacterial infections? thanks

    ReplyDelete
    Replies
    1. Re: "Am I correct in saying that DMT's help reduce relapses triggered by viruses but are less help in reducing relapses triggered by bacterial infections?"

      I am not aware of any data to support this statement. The trials don't collect data on whether relapses are triggered by an infection or not.

      Delete
    2. Thanks.
      Interferons are proteins produced naturally in the human body, and help fight viral infections in the immune system. It’s thought that beta interferon can reduce (and might prevent) inflammation which can damage nerve fibres in MS. (MS Society website). I need to read into this more.
      My relapses always begin with either an infection or a period of stress. I'm due to start Tecfidera this month. I always make a record of my relapses and get infections and relapses recorded at the GP surgery.

      Delete
    3. I was speaking to a RRMSer today and they said to me their relapse trigger is always heat, their last relapse was in the hot weather.

      Is there any particular reason why trials do not collect any data on relapse triggers? or a seperate study on relapse triggers, have any been done?

      I would have thought it could be useful in understanding the mechanisms of relapses.

      Delete
  30. Epstein-Barr virus persistence and reactivation in neuromyelitis optica.
    http://www.ncbi.nlm.nih.gov/pubmed/25433035

    ReplyDelete
  31. Hey Team G.
    How is the Charcot trial going, and when will you be able to share the results? Don't suppose there's any chance of a pre-Xmas sneak preview? :)

    ReplyDelete
    Replies
    1. sorry no sneaky peeks.
      I think around second quarter in 2015 for getting some results.

      Delete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.