Friday, 4 July 2014

Unrelated Blogger Comments July

Sometimes you want to say something unrelated to the threads. This is the place for you.

22 comments:

  1. Any thoughts about this (I presume) theoretical treatment for EBV?

    http://www.neomatica.com/2014/06/27/designed-protein-overcomes-epstein-barr-virus-strategy-evading-immune-system/

    If it did work peripherally in humans, would it also have to cross the blood-brain-barrier if it was going to get EBV infected CNS cells? Is it likely this would cross the BBB?

    I take it also that this is a different Prof Baker, MD?

    ReplyDelete
  2. Well, there you have it:

    http://www.neomatica.com/2014/06/27/designed-protein-overcomes-epstein-barr-virus-strategy-evading-immune-system/

    How long will it take to be availible as a working drug? I guess 20 yrs (trials) + 10-15 yrs for making a working substance?

    ReplyDelete
  3. The "highly effective" treatment fingolimod appears to reduce macular volume in all patients:

    http://m.neurology.org/content/82/10_Supplement/S4.004

    I have heard nothing about this on your blog. I think this is important since macular volume is being evaluated as a measure of brain atrophy.

    ReplyDelete
    Replies
    1. This is a meetings abstract from the AAN and not a full paper, we will no doubt comment on this when it appears.

      Delete
  4. Hello. I am a RRMS patient and it has come to my attention hyperacusis (increased sensitivity to noise) seems more common that I first thought in MS. I had MS double vision some time ago and had hyperacusis and hypervigilence at night time. It was quite distressing. It would be a great PhD research idea for some research to be done in this area.

    ReplyDelete
  5. I've got a question regarding MS and autism/Asperger's.

    Do you happen to know if there is a prevalence of MS in autistic children and adults? Any papers?

    Are there any MSers out there who would describe themselves as autistic or even have been diagnosed with autism/Asperger's and MS?

    ReplyDelete
    Replies
    1. I always wondered if I had mild autism, but it never fit the profile. After diagnosis, I started reading about brain damage generally. Yes I have some social deficits, some other symptoms, but I think it's just ms.

      Delete
  6. Tecfidera alternative in phase 1

    from the internet (google search if you are interested)

    ALKS 8700 is a novel drug designed to convert to monomethyl fumarate in the body and relieve MS symptoms. The biotech is kicking off a 125-patient, randomized Phase I trial to determine the safety and tolerability of multiple formulations and doses of the oral drug, looking to nail down the ideal setup for further study......Alkermes believes it has a shot at developing a successor that will allow for once-a-day dosing with fewer side effects.....

    ReplyDelete
  7. Breaking news in MS research

    http://www.wcax.com/story/26046227/breakthrough-in-ms-research-at-fahc

    Profs.
    do you know which new drug they are testing? Seems they and other 17 MS centers in the world are doing clinical trial on a new drug with very good results....

    ReplyDelete
    Replies
    1. No idea, it is an induction therapy which is an infusion so sounds like alemtuzumab .

      Delete
    2. It's twice a year, so not alemtuzumab.
      It could be ocrelizumab

      Delete
    3. OK, but shows how rubbish the reporting is as you dont know what was done

      Delete
  8. I am a RRMSer. Would it be possible please to have a survey on your blog regarding triggers of relapses? I know infections as a trigger has been documented. Stress, lack of sleep, vaccinations, pregnancy and heat is also reported. I know what may trigger a relapse for some may not for others. Many thanks.

    ReplyDelete
    Replies
    1. Since Dec 2013 I have had five relapses/pesudo relapses. Dec 2013 I had left ear pulsating, this turned to vibration advised by GP possibly fluid on ear. Then a week later I get a hemi-facial spasm. I was not advised by the GP fluid on the ear could mean an ear infection. I visted A&E with hemi-facial spasm again no one advised me this may have been triggered by an infection.

      Feb 14, ear infection and alloydonia on left leg for three weeks. Plus UTI confirmed not advised I could take antibiotics.

      May 14 sensory relapse, numbness between legs, sole of left foot, back of left leg and lasted three weeks. Possibly triggered by stress.

      End of May 14 tingling spine and sneezing. Possibly hayfever or mild infection.

      June 14 heavy legs, sore throat. antibiotics taken.
      I purchased a urine test kit with sticks this week. I have been trying it out. I have had to become a researcher on MS to know how to manage my condition.

      Delete
  9. Will we get to see the videos from the last research day?

    ReplyDelete
    Replies
    1. I have seen the videos and am waiting to hear when they will be launched..but its true when they say the camera makes you look fatter:-)

      Delete
  10. Sleep apneoa in MS. I used to suffer from sleep apneoa for many years before my MS diagnosis. It would happen at periods when I was stressed. I understand this can be fairly common in MS patients. I began meditation in March 2013. I was diagnosed with possible RRMS in March 2013 then definite RRMS in Nov 2013. I have had no sleep apneoa since March 2013. I also do a breathing technique most times before the meditation.

    ReplyDelete
  11. Knights off their horses....

    Very nice to know MouseDoctor.
    But now?
    What are supposed White Knights to do?

    ReplyDelete
  12. Who are the white knights? When you say off their horses, is this a good thing or bad thing? Have they been knocked off or did they get off to fight? Is Prof G a white knight? Are you the equivalent of Friar Tuck or Falstaff?

    ReplyDelete
    Replies
    1. (a) Info on blog (b) Good thing (c) No and yes (d) No (e) No

      Delete
    2. Prof G is not a knight?! Now I'm really baffled. Looking forward to the day you can explain this tale :)

      Delete

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