Thursday, 1 December 2016

Unrelated Blogger Comments December

Want to Say something. This is the place for  you

19 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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    Replies
    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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    Replies
    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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