Tuesday, 1 December 2015

Unrelated blogger Comments December


Sometimes you want to ask something that is related to the threads this is the place for you.

48 comments:

  1. Long term reader here... is anyone working on improving balance problems? I looked at some websites and they suggest "a cane/support equipment" as a solution. lol, very freaking useful - I wonder if they would be content with such a solution if their children ever had bad balance problems.

    In other news, Mr Perry - just curious - how are you doing after your HSCT? Any follow up appts / improvements?

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    Replies
    1. Some physiotherapists can help with exercises that improve balance, especially if they are a physio with a particular interest in neurological problems. You've just got to find the right physio

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  2. The EBV work of Professor Michael Pender in Queensland was of great interest to me. Can anyone shed any light on its progress, or that of Gary the patient he was working with? I believe a phase I trial has been completed?

    Thanks, Dan.

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  3. I had my 6 month post Lemtrada check-up today. The nurse mentioned she had been to a conference talking about time is brain. Hers views today were very different to two years ago and in a good way!. Keep up the good work as you are getting heard.

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  4. http://medicalxpress.com/news/2015-12-hivaids-drugs-brain-insulation.html
    Anti-retrovirals may impact myelin by disrupting oligodendrocytes. Implications for the Charcot project?

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    Replies
    1. Oh exactly Steve S, that's what I read also in the University of Pennsylvania site. Of the investigated drugs was not the Raltegravir, AZT showed no impact on oligodendrocytes...
      http://www.upenn.edu/pennnews/news/hivaids-drugs-interfere-brain-s-insulation-penn-chop-team-shows

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  5. Long time reader here too...my questions are more related to PML.

    1. I'm assuming BioGen approved the app you published as my neurologists tell me that if I'm JCV+, the risk is 1/1000 no matter my titre level as explained by BioGen to them.
    2. If it is approved by BioGen, then shouldn't the app be made public by BioGen?
    3. If we follow your tool , and titre levels fluctuate, shouldn't JCV +ve Msers be tested regularly? If so, how often?
    Thanks so much for such information!!! I feel a little bit positive everyday I read your updated posts.

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  6. Any comments on BHT?

    It is allegedly antiviral and might therefore cure also an infection that is (possibly) related to MS?

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  7. Slightly off topic, not sure if this is relevant. Just noticed an advert in the elevator for a hangover cure service. Someone will arrive at your home and give you an IV. Seams like a terrible idea and waste of medical services.

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  8. And this Danish study that relates the lipid metabolism, MS is a mutation in the CTP-1? http://www.medscape.com/viewarticle/854957

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  9. Cinara,

    Thanks for this, it is very interesting. I would be interested in MD's opinion. If this is true would it be that we would need to connect EBV & low Vit D to the lipid metabolism?

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    Replies
    1. Aidanthis this study here also seems to be very interesting...
      http://www.uphs.upenn.edu/news/News_Releases/2015/12/robertson/

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  10. http://mbio.asm.org/content/6/6/e01844-15.abstract
    EBV found to infect neuronal cells and cause cell lysis.

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  11. As someone diagnosed with PPMS, who is probably also having the added bonus of superimposed relapses now, and who is being offered beta interferon or dimethyl fumarate, what would be your advice? a) Get injected with or swallow it all. b) Ask for a different (possibly pointless) medication. c) Wait for a scientific breakthrough / miracle.

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    Replies
    1. We can't offer individual advice but taken nothing over something that has proven benefit for relapses is a choice. You can ask about approaches that have benefit for relapsing PPMS and ask what do you know about each of the two drugs you mention.. The MS trust has a breakdown of the different drug choices and you should speak to your nurse and neuro as I can't tell you what is right for you.

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    2. Thank you! :o)

      (Sorry, forgot to sign in with my alias last time.)

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  12. Just read the information leaflets for Extavia and Betaferon. They contain human albumin which carries a risk - how small I don't know - of transmitting CJD. So it says. Can't they screen it for this virus? Crikey!

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    Replies
    1. Good point, thanks. But there are methods of screening for this these days I would have thought? Perhaps they are not reliable.

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  13. If GammaHerpesVirus may trigger the MS to make the HSTC, he would "restarting", eliminating B cells infected with the virus? And anti CD20 would be preventing the proliferation of these infected cells?

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  14. https://www.youtube.com/watch?v=bgDWIQVrrDw
    interesting symposium on stem cells and the path to clinical therapies from Gladstone Institute in California.

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  15. Any comment on this ?

    Dec 7 2015
    'A protein activated by vitamin D could be involved in repairing damage to myelin in people with multiple sclerosis (MS), according to new research from the University of Cambridge. The study, published today in the Journal of Cell Biology, offers significant evidence that vitamin D could be a possible treatment for MS in the future.'

    http://neurosciencenews.com/myelin-vitamin-d-ms-3233/

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  16. Here's a scenario: Patient A has aggressive RRMS but which is taken to long term (5 years) NEDA by Tysabri. Unfortunately Patient A had high risk for PML. Patient A moved to Gilenya, but 8 months later an MRI scan found at least one active lesion. Patient A is intelligent and has a relationship with his/her very good doctor whereby the patient has had a lot of input as to treatment.

    Patient A and his and/or her doctor's preferred next step is Ocrelizumab, but it may not be released until 2017 and the nature of Patient A's MS does not favor letting things sizzle. Rituximab has potential financing issues, but is a favored alternative. Alemtuzumab feels like a badly timed choice, but will be under discussion.

    There is another option to be explored given Rituximab's uncertainties and Ocrelizumab's delay. Go back on Tysabri. Of course, no advice can be given for Patient A and none is requested, but is there any recent data on such a return to Tysabri that might be applicable to this case? Is 8 months on Gilenya at this time considered to be a drug holiday that might reduce a patient's PML risk again?

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  17. If anyone knows of any, I'd be interested in further papers on the influence of influenza virus upon MS development or disease course.

    http://www.nature.com/nrneurol/journal/v7/n3/full/nrneurol.2011.10.html

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  18. I remember reading Barts offer their MS patients who have been on Tecfidera an annual MRI scan.
    Is this a brain only scan? or if the patient has brain and spine lesions would it be brain and spine scan?
    I know a brain only scan is quicker and would cost less than brain and spine MRI scan.

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    Replies
    1. Brain scan only, by ratios supratentorial disease is more common.

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  19. http://www.nature.com/neuro/journal/vaop/ncurrent/full/nn.4193.html
    Oligodendrocyte cell death can trigger the inflammatory response mediated by T-cells.

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  20. Just noticed this:

    http://www.businesswire.com/news/home/20151217006297/en/GeNeuro-Announces-Launch-Phase-IIb-Proof-of-Concept-Study

    Is there any data published from previous trials?

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  21. Any comments on this? Processed food linked to autoimmune disease. http://health.infohubweb.info/2015/12/18/scientists-officially-link-processed-foods-to-autoimmune-disease/

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    Replies
    1. Sounds like the Nature paper from 2013...Sodium chloride drives autoimmune disease by the induction of pathogenic TH17 cells.
      Kleinewietfeld M, Manzel A, Titze J, Kvakan H, Yosef N, Linker RA, Muller DN, Hafler DA. Nature. 2013;496:518-22.

      Nothing in CMAJ for december either

      Are you refering to Dietary Fatty Acids Directly Impact Central Nervous System Autoimmunity via the Small Intestine DOI: http://dx.doi.org/10.1016/j.immunity.2015.09.007

      I dont have acces to paper at the moment but looking at thimbnails of data the differences look miniscule.

      Just waiting fo rht paper that says salt influences the micorbiome, Ive seen the presentation so its on the way.

      So is this red hot news from the press? or old news

      Delete
  22. Are any of the strong painkillers - which one may be prescribed for migraines from hell, for example - even just slightly suspected of being possibly neuroprotective?

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  23. Any comment?

    01-12-2015
    MedDay's MD1003 study fails to reach primary endpoint.

    A second placebo-controlled study of MD1003 in the treatment of progressive multiple sclerosis has failed…

    http://www.thepharmaletter.com/article/medday-s-md1003-study-fails-to-reach-primary-endpoint

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    Replies
    1. Sadly, that would hardly be an announcment to rattle the cosmos, since the first study only showed some sort of an effect in circa 10% of the subjects. Biotin quickly became like the emperor's new clothes. Believe in it (because you want to) and it does the job. For some people. Just my opinion - as a person with progressive MS who really, really wanted to believe. And then just got annoyed at the hype.

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    2. I don't want to comment as I am not signing up to pharma letter and can't see the information but failure does no surprise me, so I think a healthy dose of skeptisism shown by our star exchanger is not a bad thought.

      We have to wait until the data is published

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    3. I also wanted to believe, and will be interested to see what happens with Biotin in the future. I note that the trial referred to above was specifically for Optic Neuritis patients.
      http://www.businesswire.com/news/home/20151130006379/en/MedDay-Update-MS-ON-Study-MD-1003
      The MedDay CEO is quoted: "MedDay will now pursue the development and file MD1003 only in progressive forms of MS".

      This webpage provides a nice simple explanation of the trial data for those of us who are not "technically" minded.
      http://www.fiercebiotech.com/story/medday-misses-endpoint-phiii-multiple-sclerosis-vision-loss-trial/2015-12-02

      In many ways it still comes back to the basic point that there is nothing out there for progressive MS, so I still remain slightly hopeful that something positive will come from Biotin (although probably/possibly too late for many of us). At least so far it has been shown to have no side effects - which is something nothing else used for MS can claim!

      Delete
  24. Is oxytocin neuroprotective? (http://www.ncbi.nlm.nih.gov/pubmed/20399835)

    Excuse for cuddles and... Ahem. ?

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    Replies
    1. This is a hypothectical based on some science but I would want to see better data before I believe it.

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  25. If a person develops antibodies to beta interferon, administered as a DMT, do they also develop antibodies to their OWN interferons? Could their own anti-inflammatory response be negatively affected by having had beta interferon?

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    Replies
    1. Yes they do. Protein drugs can cause neutralising responses and this is a problem when using cyctokines as a target. The interferons designed to be anti-viral so this is the thing that would concern me more, however there are many alpha interferons that may be able to over come some of the problems

      However, there are lots of

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    2. MD Beta and Alpha Interferons act against the virus of Hepatitis B and C, would act against other viruses?

      Delete
    3. Hi MD,

      Sorry could you please help clarify... What are the implications of developing antibodies to your own interferons? Higher chances of a relapse?

      Is this the same with Copaxone?

      Thank you for your help.

      Happy New Year :)

      Delete
  26. [Sorry, didn't sign in with my name for my beta interferon question.] I have now found these posts below, which heighten my concerns - I would be very grateful for the latest thinking on long term effects of NABs.

    http://multiple-sclerosis-research.blogspot.com/2011/12/nabs-what-about-long-term-implications.html

    http://multiple-sclerosis-research.blogspot.com/2013/01/neutralizing-anti-interferon-beta.html


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  27. Docs day before the announcement was made in various media queo research have confirmed the cause, as suspected, the Amyotrophic Lateral Sclerosis. They studied cases of ALS linked to mutations in the SOD1 protein and realized that SOD1 creates a temporary cluster of three molecules - the trimer. This trimer is very toxic to motor neurons, which leads to the death of these cells ... I know they are different pathologies, but this study have any implications for MS, especially progressive forms? Why we know that the two conditions hold in common is the neurodegenerative factor. It has been researched enough on oxidative stress in MS then the SOD1 would have "something to say" about MS as well, since she is acting in apoptosis and destruction of free superoxide radicals?

    http://www.medicalnewstoday.com/articles/304608.php


    http://m.pnas.org/content/early/2015/12/29/1516725113.abstract?sid=f1c0b9ae-0407-40ef-b114-647c1a8c17b1

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