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  • How do Barts MS approach lymphopaenia? Eg:
    pwMS with baseline lymphocytes at least one year post dmt <1.5 >0.8
    pwMS with history of lymphocytes <0.5 >0.2 with DMF or teri?

    • Apologies for such an open question on a subject that's kind of been covered before. I'll attempt to answer it myself 😉 here goes:

      Depends on the pwMS. If treating early enough choose (or switch to) Alemtuzumab after which most people drop to zero before recovery regardless of baseline count. I guess the same will apply to ocrelizumab. I have at last managed to print your guide to off-label cladribine and see the dose adjustment to avoid grade 4 lymphopaenia is fully explained, thank you.

      Is grade 3 lymphopaenia with teriflunomide such a bad thing? Maybe not, but is it worth it for the moderate benefit teriflunomide offers when we have better options available?

      I suppose there remains the option of sticking with CRAB drugs, I know how much you love those 😉 hahaha


    • If you accept today's post the lymphopenia grade is irrelevant the real question and is how many memory B cells are there.

    • oh there is an answer to my question… no need to repeat the answer when you come across my actual question lol

    • Many of the white cell targets are probably nothing to do with ms and so their depletion is irrelevant to disease activity although they are important in infection control. So by focusing descisions on the disease causing cell types you get a more personalised approach

    • someone asked me this question a while ago. i didn't know the answer and i hadn't had the time to find out, even in the absence of accessible data to me (full journal articles, which can only be accessed through my partner's uni account)…

      i hope someone answers it, for whatever it is worth…

  • What are the UK (NICE) guidelines for MRIs? I don't understand why my hospital only conducts brain scans (without contrast) when MS is a brain and spine disease. As neuros, do you usually only conduct a brain scan?

    I was diagnosed in Sweden and the MS protocol is very different over there i.e scans of brain and spine are conducted.

    Are these guidelines set locally? Is there any policy guidance on this that I can show my neuro?

    • if you cannot convince your neuro to order a spinal mri, please find a new neuro. if the uk is too cash strapped to pay publicly for the spinal neuro, if it is within your resources, consider paying privately or travelling outside the uk (eastern european countries will do them for next to nothing if you can get yourself there).

      i wish you all the best.

    • On diagnosis it can be different as I had a brain and C spine MRI (in UK), then went on to have a full spine and brain MRI six months or a year later as I was deteriorating fast. My symptoms did merit a full spine MRI.
      It's the routine annual MRI (for Tecfidera for example) that generally would be brain only. Unless symptoms suggest a relapse and need for a spine MRI too.

    • considering MS is so variable and symptoms don't always match visible lesions, if spinal MRIs are based only on a relapse felt by a person, that's quite sad.

    • Clinical signs (observation of the patient) might also merit a spine MRI.
      I don't think the NHS can justify the expense of a full spine and brain MRI with contrast as annual routine if the pwMS is stable.
      It can take up to 90 mins to do a full spine and brain MRI with contrast, as scanned segments have to be repeated with the contrast.

  • I can't seem to post my comment on Prof G's post today on death for some reason, the blog is not complying. Anyway here's my reply: I always would shy away from discussing these things (death).
    My aunt recently passed and she used to be a nurse. She left her body to research and I have taken some kind of inspiration from that to do the same for myself. I find medical research fascinating.

  • I read an article today on misophonia, people who are driven mad by ordinary noises such as people eating crisps, or people breathing. I hear lots of noises like that which drive me crazy. It made me wonder whether pwMS more noise intolerant than other people? I can't cope with music in shops and bars or with open plan offices. I am overwhelmed and can't even think at times.

    • Yes this does seem so for some pwMS. I'm sensitive to sound and light. Supermarkets and kids shouting, noises of cars and buses on the road. Noises from neighbours slamming doors and music, I've become more intolerant.

      Artificial lights in supermarkets and shopping malls, bring on an uncomfortable unsteady feeling.
      It's like the MS has made me more sensitive.

    • Does that mean that people are going to be less likely to be misdiagnosed in the future as well? This would be good for everyone, I would have thought, a definitive test

    • I did take the challenge a week ago.

      I am hoping the NDG goes the challenge to do the Barcelona study which does something's my similar and not the same answer. The Australian group is aiming to supply a test so they are getting lots of marketing for investors. Is this the real story.

      PS see Brett from Ms translates for an Oz spin

    • Can anyone answer this… I started taking 5mg of biotin, which was going great until my urine became highly concentrated and my bladder felt uncomfortable. Seemed to me like my body was starting to struggle to get rid of the excess. Maybe I wasn't drinking enough, but I really have no idea how people manage the biotin trial doses of 300mg per day.

      How can there be any point in massive doses if the body just excretes it? Were doses of 5 or 10 mg – already high – trialled at any time?

    • I can't comment your question but serves as a reminder that most drugs can have side effects and this is the risk of self-medication. A pharmaceutical compnay monitors people and would put concentrated urine into the data bases and if other people develop this then the issue becomes known

    • No problems Biotin. I take biotin but at doses that can go from 50 to 100 mg. I also use it as B vitamins. Now my neuro knows and accompanies me, I do periodic blood tests to see if there is no overdose. But 300 mg is a very high dose, certainly would come with built-in side effects.

  • Depression in MS may be due to various causes but I found the following study interesting with regards to brain health.

    The study suggests the new possibility of adding clinical dieticians to mental health care teams and making dietitian support available to those experiencing depression.

    "It also supports the previous extensive research from human population studies and animal research suggesting that diet is a key determinant of mental and brain health," Professor Jacka said. Medical Newstoday.

    A randomised controlled trial of dietary improvement for adults with major depression (the ‘SMILES’ trial)

    Felice N. JackaEmail author, Adrienne O’Neil, Rachelle Opie, Catherine Itsiopoulos, Sue Cotton, Mohammedreza Mohebbi, David Castle, Sarah Dash, Cathrine Mihalopoulos, Mary Lou Chatterton, Laima Brazionis, Olivia M. Dean, Allison M. Hodge and Michael Berk
    BMC Medicine201715:23
    DOI: 10.1186/s12916-017-0791-y
    Published: 30 January 2017

    • Its in the blog posts somewhere…happy hunting. I think that hypothesis was so last year 🙂 Maybe in one of his talks

  • Team G, if a pwMS (or group of pwMS) are looking to write an academic article on MS do you have any suggestions please?
    I know there are a few online entry level journals which may be more accessible with regards to publishing. thanks

    • First thing I would say is who is your target audience?

      This may help you decide where to try to go.

      Once one person had done FOI to get data on number of people with MS and we offered to help them get it published. They never came back to us.

      If you are aiming at academics…then there are plenty of journals…but it will depend on the editor and the content

      Try get some people independent of you, to have a look and see if there are holes in your argument..maybe there will be in an opinion piece.

      One example is to publish it online…two examples spring to mind.

      One was by Franz shelling of CCSVI fame. Maybe it was sent to a few journals and they said no…it was very, very, very long. He asked a few people to review the tone…. However it was so, so long I fell asleep a few times before I got to the end. Wading and treacle came to mind.

      So be as consise as possible.

      Another example is Julian Borchardt, he published online about his views on the risk of PML being higher than Biogen suggested. This was followed by a paper in a science journal. I have taken his contact details from the paper. Hope he does not mind me providing this information, but I know he is proud of his work and getting it published was a positive experience and believe he has another publication planned.

      He is listedn as an Independent Statistical Consultant in Germany. Electronic address: julian.borchardt@gmx.de

      Also think about the costs of publication if you are aiming to go into the academic world this can be $3,000-5,000 per article, if it is a print journal there may be page charges…However, most journsls can offer discounts. Alternatively one could croww fund the costs

      There are many free ones too

      He may give you some tips.

      If it is not too long. I would be happy to read it. Our emails are at the top of the page

  • How much longer does the yucky foot need to stay on the home page? Its a very noticeable image and someone almost noticed it today at work.

  • The BBC website health headline today is: Vitamin D pills 'could stop colds or flu'.
    This is important (in my opinion) for pwMS as infections are not good for MS.

  • I've been thinking about my care as an MS patient and it seems the several problems I've experienced are due to lack of communication or poor communication. Between myself and HCPs including doctors but also secretaries.
    Has any other pwMS found this?

    • AnonymousThursday, February 16, 2017 8:58:00 pm I would venture a guess that every single patient has found this (unfortunately)… it's just that the severity of the problem varies. But yes, communication is a huge issue, in my very humble opinion.

    • Thanks for responding. Communication has really been a huge problem for me. I feel I am always chasing appointments, results and information. It's good that I have the cognitive ability still at the moment to do this and a bit of knowledge how the NHS system works.
      It must be hard for others and carers. What can be done about it to make things better?

    • I wonder to what level communication with patients is taught at medical school. At first glance it may seem basic or obvious but it isn't.
      Does better communication cost more money?

    • The fingolimod in secondary progressive EAE I may comment once I can see the full paper, but I may not unless I can confirm it is really a secondary progressive model.

      I suspect it is relapsing progressive and relapses drive the worsening but as it is not synchronised then the line graph looks secondary progressive.

      I have asked the last two NOD papers published in Japan and Australia for raw data and got nowhere.

      It is important because despite what is said in the abstract, the Harvard group have reported that this model responses quickly to T cell immunosuppression so fingolimod may work.

      In our progressive system it was not that great just like fingolimod was not that great in primary progressive MS.

      Will they try this in SPMS I doubt it as siponimod is being developed for this.

      Then in vitro fingolimod is not the active agent and it is being used at hundreds of times above the s1p1 binding efficacy and we now know that it it is a cell killer.

      Food for thought. If it is SP EAE we will use it

  • I've been thinking back to when I had my first MS symptom, double vision.
    The neurology registrar said I may have a 'swelling on the brain'. Then once I'd had my MRI scan he telephoned me to say, yes it's a 'swelling on the brain', like he'd thought.

    Then I was prescribed steroids.
    So is this what is normally said to patients? (a swelling on the brain).

    • There are so many imods in trial at the moment. As they work on S1P1 they will work..Like fingolimod. We don't need to give them free advertising.

      The surprise would be if they didn't work.

      As the trials are announced we may report.

      once approved we will report.

      It remains to be seen what will happen if fingolimod patent is not extended. The price should plunge making it interesting to see what the imods me tops will do.

  • Watched Stephen hawking movie recently. Made me wonder what the difference between ms and motor neurone disease is…. anyone?

    • Motor neurone disease has about the same occurance has MS, but it is usually a very devastating disease usually causing death within a few years. In some instances the there is significant motor nerve loss due to genetic variants

  • NHS MRI scan results – should the patient receive a copy of the MRI results letter?
    I understand under the Hospital Constitution this should be so?
    For the last 3 or so years I have never been sent a copy of the MRI results letter and have had to book GP appointment and ask the GP to print off the letter.
    This seems a waste of GP time.
    The GP surgery admin team say the letter and MRI clinical report are property of the hospital, so the admin team can not print off a copy.

    • I receive copies of letters sent to the GP by the hospital. It was by reading one of these that I learned I have ms!!

  • Some pwms notice that certain foods seem to irritate some symptoms, could it be the vasoactive amine content that is responsible and is there any correlation with ms and reduced/inactive DAO?

    I ask because I first went into anaphylactic shock at around the same time my histamine intolerance started and I had the first noticeable relapse. Seems like a lot of new issues surfacing at the same time.

  • HIT High intensity training for MS.
    Are there any pwMS that do this? I think it could possibly be promising.
    There was a trial of elderly people (not MS). Short six-second bursts of vigorous exercise have the potential to transform the health of elderly people, say researchers in Scotland.
    A pilot study involving 12 pensioners showed going all-out in very short bursts, reduced blood pressure and improved general fitness over time. The team at Abertay University believe it could help avert the "astronomical" costs of ill health in elderly people.
    There's a current trial of HIT for mild MS, EDSS less than 2.5.

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