Wednesday, 1 October 2014

Unrelated blogger Comments

Need to comment on something unrelated this is the spot for you

39 comments:

  1. I'm wondering what the consensus of you and Sir Jeffrey and the other brilliant MS doctors you hang out with in the UK is about simvastatin. Given that statins may not got to further trails would you recomment an MS patient's taking statins to slow rate of brain atrophy. If so, would a daily dose of simvastatin be recommended. If so, would 20 mg or 30 mg suffice? The idea is to avoid side effects but still have a salubrious effect on the rate of atrophy. I know the trial was 80 mg per day. Would atorvastatin have the same effects as simvastatin?

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  2. Yes I agree that this question needs to be addressed. I am in a dilemma currently as have been taking 80 mg simvastatin (for above reason, diagnosis is spms) and due to see GP on Tues for review. Shall I request continuation of 80 mg dose or would 40 mg achieve the same? I doubt that anyone is equipped to advise. Comments welcome!

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  3. Is there any correlation between height and MS susceptibility and/or severity? Or could this data be retrieved from the registers

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  4. Encephalopathy in MS. I have had cognitive problems, loss of memory and confusion before during a severe MS relapse (brainstem involvement). I wondered if other MSers have? I know encephalopathy is seen in ADEM.

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  5. This is interesting. I was diagnosed with cealics last year and since cutting gluten out of my diet, I've felt so much better. But what is more interesting (well to me) is that they times I've inadvertently eaten gluten since then, it has felt like an MS relapse. Basically same symptoms I get with a relapse - mild sensory/visual. Except it only lasts around 24-48 hours, while a relapse for me lasts around 5/7 days on average. Duration seems pretty much the only difference as far as I can see in terms of symptoms. http://www.healthline.com/health-news/leaky-gut-implicated-in-multiple-sclerosis-092514

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  6. I've been reading the Guidance on infection control in schools and Glandular Fever has no recommended period for children to be away from school and no comments added.
    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/353953/Guidance_on_infection_control_in_schools_11_Sept.pdf

    I think this needs to be changed. Either I am interpreting it wrong or this is irresponsible.
    When I had glandular fever (in high school) I was exhausted for many weeks, I could not of attended school. I kept falling asleep on the sofa in front of the TV with my mouth open.
    I know of someone who caught glandular fever through sharing lollipops in school, not by kissing.

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  7. Sort of related to the South African and Iran posts, it is difficult to get stats on many countries but I think that it needs to be emphasised that MS affects individuals from most cultures. Though rarer nearer to the equator or in certain groups, though it seems it is now taking hold and does exist. For example within Bantu society there is now a growing MS risk, same for the Maori in New Zealand, I wonder about the Inuit and Same people - are they still unaffected? MS seems to be on the rise but why? Could it be lack of D3, pollution, dietary changes, EBV - all of these or some of these factors and more? Totally puzzling to me. But the West (people of European ancestry) can't sit in a bubble, thinking we are the only ones affected.

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  8. Lhermitte's sign in MS. I had reverse Lhermitte's, a shock going up the spine to top of my neck, when I was leaning forward to grab something over the bath. I mentioned this to a general neurologist and he said that wouldn't be Lhermitte's but I guestion this. I have brain, neck and spine lesions.

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  9. Is MS related to astigmatism and/or presbyopia? Can it cause presbyopia to progress rapidly?

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  10. Is HSCT therapy the next CCSVI? Australian spend $100,000s travelling to the US for treatment.

    http://www.abc.net.au/news/2014-10-18/australians-seek-ms-treatment-overseas-despite-risks/5823790

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    1. Difference is bone marrow replacement has been shown in trials to do somerhing useful in multiple differrnt places

      That cant really be said for ccsvi.

      However there is bone marrow replacement and the dogey stem cell clinics that you should steer well clear of

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    2. HSCT is in Phase III clinical trials (having already completed Phase I & II), and has delivered very impressive and consistent results across multiple international centres. It is also well understood and based upon proven science which is consistent with the current hypothesis around the pathology of the disease (and mechanisms of other drugs).

      CCSVI isn't, and hasn't. In fact, it's been disproven.

      So no, HSCT is not the next CCSVI.

      It is in fact the single most efficacious treatment for active RRMS. However, unfortunately there is no money in it as you can't patent someone's own stem cells, meaning no pharma interest in backing it. So expect it to be roundly disregarded for another 8-10 years by neurologists who are hamstrung from recommending anything other than what's on the NICE guidelines for fear of being sued, or putting their neck on the line versus the pharma cash cow.

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  11. Just listening to BBC radio 4, where the Medical Innovations Bill was discussed. Lord Blencathra (he has MS) seemed to be saying that the scope of this Bill should be extended to 'non terminal' conditions like MS. It could be argued that MS is terminal for some with MS and for many it cuts a few years off the average life span but it's not politic to do so, and frankly for many people with MS, death is the least troubling aspect anyway. I was only half listening but I found this link to a June debate in the House of Lords, where he is arguing for its extension to conditions such as MS.
    I can understand why many people with MS would agree, in principle I do, though at at this point in my life, I don't need an 'experimental' drug. I especially agree with his comments on lawyers!
    http://www.theyworkforyou.com/lords/?id=2014-06-27a.1449.2&s=%28multiple+sclerosis%29+speaker%3A10394#g1473.0

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  12. http://www.bbc.com/news/health-29645760
    olfactory cell transplant into damaged spinal cord done at UCL

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  13. Biogen-Idec has just reported a case of PML who was on Tecfidera.

    http://www.reuters.com/article/2014/10/22/biogenidec-brief-idUSWEN00E4Y20141022

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    1. Oh dear. That's unexpected. I'm sure there'll be more to follow.

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    2. Posted by Biogen competitor...this is bag news

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    3. p.s. bad news.........The question is what was the white blood cell counts,prior immunosuppression, etc?

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    4. Since I have seen the post in Reuters this afternoon the share price has taken a nose dive. However there is nothing on the company website except that profits were up 37% and increased by billions.

      This news will dint their forecasting I suspect

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    5. Given long enough, I expect cases of PML on all new MS drugs - as long as the white counts go down, there is a risk of PML. ( rituximab has it, DMF has it, Gilenya has it). The strongest in the class , Tysabri, carries a higher risk. That's life, immunosuppression has its cost.
      J

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  14. Dr G - love your blog, and thanks for taking the time out to do it. My question is this. I've put my faith in HSCT. I'm RRMS, onset was Oct 2013 (ON), accrued 6-8 new lesions over first 9 months, and was treated with HSCT in September - effectively as a first line treatment. Transplant complete. I'm now in that 10-15 year experiment you speak about. Obviously I want to maximise my odds of being "cured". If you were me, how should I manage the follow up now. Are there any neuroprotective drugs or supplements I should add as a safety net, to minimise risk of going progressive down the line (in the absence of inflammatory attacks in the meantime)? Also, if I wanted to hedge my bets on EBV being involved, is there any drugs I could take off-label (pay privately) to sure things up? I guess I'm going for the early, all guns blazing howitzer approach.
    Any hypothetical recommendations or ideas would be welcome!!

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    1. Sorry ProfG is not really able to give personal advice. We have a few ideas of things that could be useful but this needs proof. The neuroprotective drugs are currenlt unproven

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  15. MD et al,
    Any thoughts about the Tecfidera / BG-12 case with PML ( without previous Tysabri-treatment )?

    Link: http://www.cnbc.com/id/102110717
    Can it be the long-term effects of depressing lymphocytes that cause long term risks?
    If so, short term effect on replases VS long term risk for infections/PML

    Risk/benefit?

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    1. This is a surprise to me as BG-12 isn't as good at halting relapses as Tysabri/Gilenya/Lemtrada but there is lymphopoenia (reduction of white blood cells) associated with Tecfidera and so there will be the risk of PML and other conditions that arise from immunosuppression.
      Hopefully this will be an isolated case but if not then the outlokk for Tecfidera is not good as it's not as effective as the DMTs mentioned above.

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    2. Reading the CNBC title it is a sad state of affairs....it leads Biogen shares fall.....so is this all the media cares about falling share prices...a person has died....This news comes on the day that Biogen are reporting unusually large profits.

      It is interesting that investors come first. We now no longer have to wait to go to ECTRIMS etc to get the take home message as the investors are always told first many months before neuros/MSers get to officially know.

      Then there are rumour machines that circulate news before even the investors know, the closer you are to pharma the more they know and the longer you have the knowledge............tailor made for insider dealing. The company spy networks are something the CIA could be proud of. In the Ms world this is easy because it seems that MS pharma people just circulate from one MS company to the next

      Just as well I don't have to buy stocks and shares (I don't have the money anyway) for my pension pot or some of you would be crying conflict of Interest every second minute.

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  16. Prof G - could you do a post comparing tecfidera and gilenya please? They both appear to be moderately effective drugs and may be a good choice for people that don't want to take the risk of tysabri/alemtuzumab.

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  17. http://www.newswise.com/articles/research-reveals-likelihood-and-onset-of-multiple-sclerosis-diagnosis-among-patients-with-inflammatory-eye-disease

    And not before time. I had uveitis some 12 years before my MS diagnosis - and despite having sensory MS symptoms prior to this (since I was 17) and the same ones now, I could not get a diagnosis. Not even a 'possible' or 'probable', I was told categorically I did not have MS. This was at Queen's Square and seeing some of the UK's leading neurologists. On the bright side, even though it cost me quite a bit of money to eventually get a diagnosis, at least it meant I wasn't shocked or depressed when it finally came, as I was pretty convinced I had MS for so many years beforehand.

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  18. I have MS and I'm ok to admit I have a problem that could be seen as mental health related to my MS. I am on the waiting list to see a NHS neuropsychaitrist but have been told the waiting list is two years!
    I noticed in the news today Public mental health spending in England too low, says Mind. I hope I can see a general psychatist with an interest in neurology sooner on the NHS.

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    1. Mental health issues in MS seems to me to be a bit of a Cinderella area and needs to be taken much more seriously. Two years is far too long to wait.
      I hope you get to see someone a lot sooner.

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  19. An interesting business perspective on Biogen-Idec: http://www.fool.com/investing/general/2014/10/27/is-biogen-idec-inc-in-trouble.aspx

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  20. My hospital admissions for my MS over the years have been a bit of a nightmare, drugs and food left out of reach. Washing being a myth. I had no idea what nursing was until I had a number of admissions for surgery. The surgical ward had a thousand times better care. I thought things had improved. Last night I visited a relative in a specialist London stroke ward and the buzzers were not answered and the nurses when you can see them have poor English. The doctors and Physios are excellent. Please tell me things have improved.

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  21. I'd like to make an official complaint. Late on Thursday a white knights post appeared - title 'battle plans ready'. The culprit as ever was that joker 'mousedoctor'. There was no facility to add a comment or to tick a box called unhelpful. Even the chinese government alllows more freedom of expression. Unfortunately, with Prof G loafing about, mouse will use the opportunity to push on with his dungeons and dragons theme. I also see that Mouse is heading off to Italy in November for an MS conference. This is an annual event which Prof G used to attend (to visit his homeland and brush up on his Italian). Mouse will be talking about EAE. I'd be grateful if Mouse could use my one slide on the subject titled EAE is CRAP. Please come back Prof G - watching Cash in the Attic everyday is no good for anyone.

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  22. Stress in MS exacerbates symptoms, I also think that anxiety can exacerbate symptoms. I know anxiety in MS is common due to medications, having the MS diagnosis and where certain lesions are located. I'm not the only MSer to have noticed this. Anxiety is like a sister to stress, it's a close relation. I really hope stress and MS is researched soon and also how anxiety effects the MSer. I can't understand why stress and MS has not had much research as neurologists have known for years there is a relationship.

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    1. The difficulty is in designing experiments to measure what is happening, what do you look for, how do you monitor what stress is etc?
      All I know is that when our mice are stressed by noise from building work, the incidence of their MS-like disease drops dramatically, which is diametrically opposed to the effects of stress many MSers report.

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    2. I would say that mice suffering stress by noise from building work i'm not sure is a good comparison. I know there have been mouse studies with stress that are done differently to what you describe. I think the study I remember reading about looked at mouse behaviour.

      I noticed on the news yesterday the new fitness band that tracks stress and sun exposure. I'm not sure how it tracks stress? May be it would be an investment for me being an MSer.
      I know Prof G discussed the HealthVault idea.
      http://www.bbc.co.uk/news/technology-29828649

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    3. It shows the difficulty in defining exactly what stress is (I suspect it varies greatly from person to person) and how to measure outcomes.

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    4. If I was an undiagnosed patient, MS was suspected and I said I am very stressed what would a neurologist say to me /ask me?

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    5. I hope the neurology consultant would ask me questions about my stress and tell me to watch my stress. This may seem like a more holistic approach. I am not suggesting no to science/ DMT's and recommending only alternative treatments for the MS.
      My current MS neurologist is very good, he know's I have suffered from stress which has exacerbated my MS and has recently offered me CBT.

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