Thursday, 1 December 2016

Unrelated Blogger Comments December

Want to Say something. This is the place for  you

39 comments:

  1. When I search your blog with the term ”clemastine” there is a lot of articles about remyelination.
    What will be the problems with buying clemastine and start your own remyelination-treatment ?
    What dose would be the best ?

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    1. FYI Inge
      We obviously don't encourage anyone to go ahead and start their own treatments without medical supervision. Results of the small scale phase 2 trial with clemastine are yet to be published so it's difficult to comment.
      https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/clemastine

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  2. Please elaborate on the Lemtrada extension study data. What percentage were NEDA at the end of the study *without* rebaselining every year? Or at least after the second year, once the drug has had time to work.

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    1. How can that be? In CARE-MS1, 38% were NEDA at 2 years.

      I'm asking what percentage of this cohort maintained NEDA at 5 years? Surely this was a figure that came out of the extension study. Yet all we read is NEDA *per year*, so a participant could be NEDA in year 1, 2, and 5, but had relapses and progressed in years 3 and 4. Bottom line is that at the end of the five years, they won't have maintained NEDA and will consequently be in a far worse position.

      I think it's time Prof G clarified all of this. There's a lot of people reading this repeated question and it continues to be met with suspicious silence from the person who would surely know the answer.

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    2. NEDA year 3-5 was about 40% but as yoy say how can that be drop outs will need to see published data.

      As you say what is the data Genzyme need to come clean. profG can talk about stuff in public domain

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    3. I highly doubt the final NEDA percentage at 5 years was 40% if it was around that at 2 years. There shouldn't be any rebaselining performed after 2 years for study purposes (perhaps on an individual level). The fact that if was performed annually and the data presented as such is suspicious in itself. It appears as if Prof G has been gagged on this. Or at least what he knows is not as positive as many believe. The public certainly have a right to know and for Genzyme to withhold this information is downright misleading and deceitful. While I have had Lemtrada myself, I fear it's not all it's painted to be for as many people as Genzyme would have us believe. I was hoping Prof G could clear this up as I believe he genuinely cares about ms patients and the future of ms.

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  3. I have read inconsistent advice about whether it is necessary to take magnesium or calcium when supplementing with vitamin D (not to fight MS as such, but to complement and off-set the added vitamin D). Since the clinic recommends 5,000 ius of vitamin D, does it have a position on whether these related supplements are also necessary?

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    1. You don't need to take Vitamin D with calcium, and it isn't recommended.
      If you have to take Vitamin D3 better associated with Vitamin K and Magnesium.

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    2. Very few people have diets short of calcium, but they do tend to be short of magnesium. The symptoms of magnesium deficiency tend to be hidden by vitamin d deficiency. Some people taking vitamin d without magnesium get muscle cramps because they lack magnesium. The magnesium can come from food sources, most green leaves are rich in magnesium.

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  4. I like to go quad biking on rough terrain, but I have MS lesions in my cervical spine. Does the heavy vibration, jolting etc. have any capacity to worsen the lesions? It's rough stuff.

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    1. If I go on an old bus into town, one that vibrates then my buttocks tingle for a few hours after. The newer buses don't seem to vibrate as much. I have lesions in my spine.

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  5. What has happened to all the links and slideshares on the home page? I found them helpful. Thanks.

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  6. Just curious if something like this could theoretically be used to affect, or dare I say, cure MS. Perhaps comparing a person's genes to a sibling who doesn't have MS, and modifying a key gene in the panoply of MS genes so that it looks like the MS-free sibling's gene? Probably unlikely, but I thought it would be interesting to get an expert's perspective:

    Next year could see major strides toward the goal of cutting harmful genetic mistakes from a person's DNA. A gene-editing tool is a powerful technology that allows scientists to easily correct or edit DNA. "It basically gives you a scissors to cut out pieces of genes," Roizen explains. The technology was recently used to eradicate leukemia in a British child by giving her gene-edited immune cells to fight off the disease. This could represent a huge step toward treating other diseases, including correcting gene mutations that cause inherited diseases, but ethicists and scientists worry the technology could also be used to alter traits for nonmedical reasons.

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  7. Wow.. I just came across this.. about an invention that helps counteract Parkinson hand tremor, so they can do writing etc. Could it also help pwMS and hand tremors?
    http://www.bbc.co.uk/news/magazine-38208814

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    1. I saw this too... This would be amazing... Ingenious.

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    2. Today this also about tremors and MS tremors were mentioned.
      Doctors using sound waves to operate deep inside the brain with an MRI machine and no surgeons.
      http://www.bbc.co.uk/news/health-38157770

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  8. I have a question to prof G. Here goes: how long does it take for the Gadolinium contrast to get to the brain and enhance the lesions?

    I noticed that the technician doing my MRI injected the contrast mid-exam, then immediately ran the scan and I was done and out of the MRI machine like 7-10 mins after injection. Wouldn't that be when the contrast is in the brain tissue?
    I have access to the MRI pictures - it looks like all the blood vessels are enhancing???

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  9. What do people think about patient led MS research? I mean early stage patient led research such a group of pwMS coming together online or face to face to discuss patients' own research ideas. At this stage it doesn't need to cost anything if we did it together online and I would be happy to be part of this group.

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    1. maybe contact the MS Society their portfolio is essentially paitent led ideas

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    2. Thanks MD. Yes I did come across that, IConquerMS in the US and Patientslikeme. I was thinking something more independent may be. Kind of grassroots bottom up.

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  10. Did you know, MouseDoc posted almost half megabyte of text on this blog, starting 1 jan 2016?
    Size of the good textbook/monograph!

    vasys-MacBook-Air:min-rnn vasy$ wc model/mousesays.txt
    3325 79111 459809 model/mousesays.txt

    3325 lines, 79111 words, 459809 characters
    This does not count abstracts cited and comments (hard to extract automatically from blogger)

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    1. MD2 asked recently if neural network can reproduce thought process of a MouseDoctor… well not completely, but let’s see
      vasys-MacBook-Air:min-rnn vasy$ ./deepmousesays "Some say EAE" model.12
      Falling back on CPU mode
      creating an lstm...
      seeding with Some say EAE
      --------------------------
      Some say EAE may not work in its essentiality.

      That is animals go to the programmed blood vessels, the reasons will be fair for neuroprotective drugs……It is a mouse science, so does it do not want to wait it has been real clinical trial as we are water in terms in the end of the people who have work for people with MS

      This is nothing new that progressive MS drugs are not being positive. However. Should we control the immune.. It indicates that there are the developments in optic neuritis, but the trial and influence of the people to develop being reported for others:-), maybe by an experiments crop makes recently an important around you bind to be some there are already.

      I made a neuroprotective drug from the fibrosthecal reproduce monogly, by inhibitory cells and here they going to demonstrate the approach.
      We are not being reported to start with breast cancer sufferers and that the study that was not surprising that fingolimod is an antibody…...then they can form a trials the progression about the inflammatory penetrants to belangle between the best viral in the trials an effect on the closer determinile to the long term sufferers of the process with the ARRIVE guidelines.
      ///////
      It’s obvious that more iterations and layers are needed to recognise MouseDocs long sentences correctly and issues with spelling and inconsistent punctuation makes it even worse (this is character based network, that is, it reconstructs language from the scratch, character by character, without «knowing» anything else, so typos makes it very hard time for it). Unfortunately, it takes ages to train decent model on a CPU. But if someone lends me CUDA GPU enabled box… I’m sure I can train it to behave not worse then MouseDoc, even can make it run an alternative blog and send papers to the Nature :-P

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  11. I miss the rolling comments feed, is it going to come back?

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  12. If your lymphocyte count is low on Tecfidera (>0.5 <1.0) does it make you more vulnerable to any other infections than PML?
    thank you

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    1. Good question and I hope this gets a response.

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    2. So maybe not a good question!. In the spirit of self management I had wanted to know what to look out for. Maybe I don't need to worry about anything except PML and even then not worry too much.

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  13. RHB-104 antibiotics as multiple sclerosis treatment?

    Profs, what is your opinion about this new treatment? Results seems positive (reading the news with my limited knowledge...) they tell MS can be an infectious disease..

    https://globenewswire.com/news-release/2016/12/12/896812/0/en/RedHill-Biopharma-Announces-Phase-IIa-48-Week-Final-Results-Further-Supporting-Potential-of-RHB-104-in-Multiple-Sclerosis.html

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  14. And today's example of yet more outrageous price-gouging by Pharma has Teva (manufacturer of Copaxone and current owner of the firm in question) in the dock. Seems like something coming off patent rather than make drugs cheaper can be manipulated to achieve the exact opposite. Shameful behaviour, it really boils my p***.
    https://www.theguardian.com/business/2016/dec/16/watchdog-accuses-actavis-hiking-price-lifesaving-drug-hydrocortisone

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    1. Not trying to put all Pharma companies in the same basket but it is for this reason of blatant price gouging that I hope stem cell therapies are used more often in medicine. Drug companies know they are the only game in town and patients and health agencies pay the price.

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  15. Breaking the red blood cells by releasing hemoglobin into the blood, this hemoglobin ends up crossing the blood-brain barrier, taking Iron and Oxygen into the CNS, this extra iron could be causing more damage and leading to MS progression.

    But why then does the Blood-brain Barrier become so weak? And would there be any relationship between circulating red cblood cells and T and B cell levels?

    Https://wellcomeopenresearch.org/articles/1-10/v1

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    1. /wwhttp:/w.nature.com/articles/ncomms9164
      this study showed activation of CNS macrophages and subsequent adaptive immune responses with fibrinogen entry into the CNS via a breech in the BBB. Iron in free HgB causes oxidative damage to axons in progressive disease. The relationship to B & T cells may be an adaptive immune response to the resulting inflammation in the CNS following entry of HgB and fibrinogen. What causes the BBB to break down? That is the question.

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    2. Yeah Steve S, it was one of the questions I asked: what would make the BBB stay, was it so weak?

      And in the study if I'm not mistaken they talk in an attempt to decrease the amount of hemoglobin, but would that work?
      Could an anemia not detected could aggravate the problem since the BBB is weak and let everything go?

      I had already read this study on fibrinogen, MD and MD2 if I am not mistaken have studies in this regard as well.

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  16. In the promotional videos requesting funding for the latest Charcot research, an antiviral for EBV was promoted as potentially being an answer for people who haved MS already, *today*. But in a recent comment on this blog, MD stated that such an antiviral could be 30 years away, and that there may be no impetus for development.

    Could you please explain?

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    1. I think the comment you are referring to was mine. As I rememberI was particularly referring to a vaccine against EBV being slow in development and if an effective protective vaccine was developed it would take 30 years or so before we would know whether such a vaccine would stop the development of MS in those who had the vaccine, thus proving EBV was the cause of MS. i'm not sure what the state of play is concerning anti-viral compounds that are effective against EBV.

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  17. In 2011, 2012 & 2013 there was a large lesion atrophy on my MRI and doctors first thought it was NMO but when blood tests ruled that out I got the MS DX. In 2014 an alternative GP found me B12 to be low so I started treatment for that. I had another MRI in Feb16 and the lesion was not there and my MRI appeared normal. I had it repeated in Aug16 on a higher Telsa MRI and it still came back normal. I was never given DMDs as did not satisfy eligibility criteria in my area. So basically the large lesion was present in all scans between 2011-2013 and somehow has now disappeared in the 2 most recent scans and they have been looking for it. Also my disability has remained static over the last 2 years. My neuro has not been able to answer my question and says that I am a bit of a medical mystery.

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    1. MS shares many symptoms and characteristics with other pathologies, so far as I know the diagnosis of MS is given almost as excluding. Now have you come to take CSF, lumbar puncture to check the presence of oligoclonal bands?

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  18. In the morning first thing I understand our cortisol levels are the highest - on waking up.
    I wondered then would it be best for pwMS if taking oral steroids to hold off taking the first morning steroid tablet for 30 minutes after waking up? I know oral steroids probably do not work instantly on taking but if the pwMS is say on day 2 of tablets onwards.
    To be much kinder on the body.

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