Wednesday, 1 June 2016

Unrelated Blogger Comments-June


47 comments:

  1. Do people here have or have thought of living abroad with all the problems related to access to treatment?

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    Replies
    1. Yes, that is why I left my country in Eastern Europe to come to England.

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    2. I was discouraged by my boss from working abroad because of my MS. This was years ago and funnily enough the job was in Italy and I needn't have worried. could coming out of the EU ruin some other 23 year olds dreams. Truth is no one knows

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    3. I've been considering moving to Israel.

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    4. I'm considering moving from France to England. It's hard to take the plunge as the path seems quite complicated. On Tysabri right now, I still fear to have a relapse at the worse possible moment and also ask myself how are managed infusions when you are abroad, social security wise.

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    5. Well, lets hope that the UK (it's not just England!!) is still in the EU on June 24th for a start.

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  2. It conveys news as "finding the cause of MS."
    If it's because I have not given, but it is the mutation of the gene NR1H3 that acts as switches others.

    This genetic mutation appears to occur between 1: 1000 as PPMS.

    Then I wondered, do those who have RRMS may suffer a mutation in this gene and then move on to SPMS, or would not have anything to do?

    http://www.cell.com/neuron/fulltext/S0896-6273(16)30126-X

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    Replies
    1. I would also be interested in reading a commentary on above. NMSS published the following article...
      http://www.nationalmssociety.org/About-the-Society/News/Canadian-Researchers-Uncover-Rare-Gene-that-Increa

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    2. I read the news about the discovery of this gene linked to especific severity PPMS and then I remembered a previous publication in which MD spoke of the presence of lipids in the CFS, it would cause or consequence. Because LXRA NR1H3 protein produced by the gene controls the transcription of genes involved in lipid homeostasis, inflammation and innate immunity.

      Then perhaps the presence of lipids CFS can be a consequence of the action of this mutation, as can LXRA not synthesize lipids...

      Then I reflected further: what is the relationship of the activity of this gene with viral infections such as IM and low dosage of Vitamin D?

      Only a mind wandering on the news published by the media as an important short for us MSers...

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    3. BBC website today:
      Scientists discover an inherited gene for MS

      http://www.bbc.co.uk/news/health-36416531
      Scientists say they have found a gene that causes a rare but inherited form of multiple sclerosis.

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  3. I am at the CMSC and talking to American MSers about their experiences. It is quite staggering at how much it costs to be treated in the US. Please read this blog post to get an idea of the costs of private health care.

    http://insidemystory.com/2016/05/30/cost-effectiveness-in-ms-treatments/

    Long-live the NHS.

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    Replies
    1. "MS is a chronic disease that as of now has no known cure and I could conceivably continue on this treatment for the remainder of my life, amassing treatment costs in the millions of dollars"
      http://insidemystory.com/2016/05/30/cost-effectiveness-in-ms-treatments/
      She is on tysabri for $250,000 a year. Well what will happen is
      she will go secondary progressive and the tysabri will be cut off. So why is she not given Lemtrada. It would be cheaper and at least offer a chance of avoiding secondary progressive.

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  4. I have had recent training in Human Rights and it has been an eye opener to see how relevant human rights are in MS care and treatment.

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  5. What is actual lemtrada prescription rate in UK and US?
    Browsing through MS social media, and it seems like almost anyone recently diagnosed offered it.

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    Replies
    1. Well, the actual question is don't you feel you may run into big troubles with lemtrada first line?

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    2. I have heard this question repeatedly, in different formulations. I don't quite understand it. Why would you feel you may run into big troubles with lemtrada as a first line treatment?

      If lemtrada doesn't work for a person with MS, they have 2 options - redose or wait for white cell recovery and try another dmt. the side effects associated with an induction treatment may be more 'permanent' than most of the common side effects on other dmts - and that's something you take into consideration when making a decision. but why would you "run into big troubles"? You're not somehow tainted post lemtrada and can't receive other treatments....

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  6. For the mouse doctors and doctors, what do you think about this research on dietary supplements and neurodegeneration?

    https://www.sciencedaily.com/releases/2016/06/160602095204.htm

    I looked up other articles by Jennifer Lemon - the formula is in the earlier articles. It includes:

    B-complex, C, D, E, Acetyl L-carnitine, Alpha lipoic acid, acetylsalicylic acid, beta carotene, bioflavinoids, chromium picolinate, cod liver oil, CoQ10, DHEA, flax seed oil, folic acid, garlic, ginger, gingko biloba, Canadian ginseng, green tea extract, L-Gutathione, magnsium, melatonin, N-Acetyl cystein, potassium, rutin, selenium, zinc.

    Again, no one should rush out to take a bunch of supplements without speaking to your neurologist, but I do find this work interesting. It fits too with the emphasis that Terry Wahls has placed on ways to support brain health. (She prefers food sources.)

    I am taking Mito-Q regularly as an act of faith, and I hope it does help.

    Interested in your thoughts, especially concerning the relationship of this work to work on neurodegeneration in MS, particular PPMS. Thanks.

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  7. All,

    Am not sure how to word this, so as to not break the rules. Please review before publishing.

    Regarding brain health and cognition:

    There is a quantitative hedge fund that publishes a difficult puzzle every month. I didn't quite get the solution last month. How could I ask if anyone would like to work on these puzzles with me? It is a really excellent challenging puzzle and it is free.

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  8. http://www.investors.com/news/technology/biogen-loses-big-ms-gamble-as-anti-lingo-fails-clinical-trial/?ven=YahooCP&src=AURLLED&ven=yahoo
    Unfortunately anti-LINGO, the drug promoting remyelination failed to meet end points.

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  9. Anti-lingo 1 failed in studies according to their primary goal was Remyelination, today announced Biogen Idec... :((((

    http://www.wsj.com/articles/biogen-shares-down-as-multiple-sclerosis-therapy-misses-study-goals-1465306442

    http://www.businesswire.com/news/home/20160607005718/en/Biogen-Reports-Top-Line-Results-Phase-2-Study

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  10. DMF acting against Parkinson's? Here they claim that the acts in DMF via Nfr2...

    https://www.sciencedaily.com/releases/2016/06/160608120614.htm

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  11. Can someone with MS might die because of the Phenomenon of Uthoff?

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    Replies
    1. Oh, I hope not! I often have this Uhthoff's carry on. But I don't know the answer to your question; I can only say that I'm nowhere near dead yet. ;o)

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  12. Metformin could be a neuroprotective prescribed together to DMTs for those who also has MS?

    http://www.medscape.com/viewarticle/864681??src=soc_FB_160612-am_mscpedt_news_ADA

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  13. https://www.sciencedaily.com/releases/2016/06/160613102443.htm

    This is about PET scanning and sounds different to the MRI technique discussed last week.

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  14. Epstein Barr Virus — The Cause of Multiple Sclerosis

    http://www.scirp.org/journal/PaperInformation.aspx?PaperID=67272

    ReplyDelete
  15. Prof G and MDs,

    is there any evidence that MS with a mainly sensory presentation (optic neuritis, tingling hands/wrist/feet/ankles, several MS hugs, episodes of balance issues, some urinary symtpsoms) and low MRI with few abnormalities is any different under the microscope from a more aggressive presentation?

    Should the treatment be considered any differently?

    many thanks.

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    Replies
    1. Difficult to say without a biopsy of the affected areas but I don't see why there should be a difference. If sensory symptoms are occuring it is because that is where the lesions are.
      However if you are very active with lots of lesions it may indeed influence the treatment choice such that a more aggressive option may be selected

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  16. Looking for advice from those who have gone before:

    Would it be unreasonable of me to request an actual percentage of atrophy from my Neuro between my first MRI and my second? I had one at initial diagnosis, and another just recently, at the 1 year mark.

    She said it 'looks fine', but didn't give me any details. I know what the expected range of atrophy should be for a healthy adult, but not what my actual atrophy percentage was. If it's near-to, but not within the normal range, I'd still like to consider stronger treatment (currently on Copaxone) while I might still have a therapeutic window open to prevent moving to the progressive phase. I was diagnosed RR, but I'm a bit older than usual, so I'd like to take a more aggressive path if things even look questionable (time is brain!)

    So, again, my question is - is it unreasonable to ask for exact percentages of atrophy from your neuro for two MRIs that were taken 1 year apart? If so, is there a different specialist/expert that one should typically consult for this information?

    Thanks guys!

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    Replies
    1. This is one for the neuros as I am not sure to what extent brain volume is reported by the radiographers. Why not ask the question?

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    2. Unonymous - i don't think it's possible to accurately evaluate brain volume by looking at an MRI (unless the loss is significant). There are some places world wide where they are using different or similar techniques to measure brain volume: it depends on your location etc whether you have access to those.

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  17. Does anyone know if Sativex is likely to be made available for neuropathic pain in England? I have some spasms in my legs but not spasticity but do have really quite dreadful neuropathic pain, sometimes in spasms of shooting pain that make my leg jump but mostly hours of deep nagging pain. Not much working and wondered about sativex, or maybe the evidence is poor and the cost high so not likely to be available. Is there any continuing work on this or has it fizzled out?

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    Replies
    1. Sativex is not considered cost effective in England so not generally available for anything

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  18. Prof. G why have you started another blog?

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    Replies
    1. Yes, I have started a personal blog for my non-MS musings. When we suppended the blog one of the rules we put in place that this blog is only for MS-related issues. If anyone in our group wants to post about issues that are not relevant to MS they need to start their own private blogs, which is what I have done. I am not sure I will have time for it, but who knows?

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  19. I´m coming to the MS Research Day on Saturday.
    I hope to meet and great as many of you as I can. :-)
    Hopefully I can bring some good old spicy Mojo with me...

    Swedish Sara

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  20. Phase 3 studies with Ofatumumab has started.
    I liked it, Ofatumumab appears to be as accurate as the Ocrelizumab...

    http://multiplesclerosisnewstoday.com/2016/06/13/genmab-announces-phase-iii-studies-of-ofatumumab-in-relapsing-multiple-sclerosis/

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  21. 4 new risk genes for MS found in German individuals with the disease. Interestingly, the 4 genes play a central role in DNA methylation, epigenetic regulation of the most important mechanisms.

    So this brings more fuel the fire of environmental factors as necessary for the EM arises.
    Vitamin D? Infections such as EBV? deregulated sex hormones? Processed food?

    https://www.sciencedaily.com/releases/2016/06/160620112041.htm

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  22. http://nn.neurology.org/content/3/4/e251.full

    In this paper they use NGS for detection of pathogens in the CNS, one case with Gd-enhancing lesions and detection of EBV. Could this somehow translate to MS?

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  23. Am on Natalizumab and Xeralto and have a plantar wart that will not leave. Had seven freezing treatments the dermatologist thinks that the immune system is not responding normally. Could this be due to the MS or the Natalizumab? The dermatologist mentioned bleomycin would that be contraindicated?

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  24. Now that the Brexit vote is for leaving the EU, the UK should join the U.S. We could use a good soccer league such as the EPL. " England and the U.S. are two countries separated by a common language".

    ReplyDelete
    Replies
    1. You mean like the World Series where only the USA is in it?

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