Unrelated Blogger Comments Feb 2016


If you need to say something unrelated to the posts this is the place for you

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    • I dont know if its personal. I've read all 80+ pages. Its WAY past due as is proper entry for people newly diagnosed. I am all for standardization globally by people who know what the hell they are doing and will support such things as much as I can. MS doesnt recognize borders or clinicians or HMO's or insurers or a individual's lifestyle, mental status, family or any other criteria. Its about time that systems be in place that do in consistent ways.

    • I'm sorry if my question wasn't clear. I meant how is he doing with his ketogenic diet and some of his other new years resolutions.

  • Is this expected or of concern? My JCV status has changed since beginning natalizumab.

    "MS Drug Tied to Rising JC Virus Antibody Levels
    Virus May Induce Deadly Brain Infection

    MINNEAPOLIS – People who take the drug natalizumab for multiple sclerosis may have up to a 10 times greater risk of developing a risk biomarker for activity of a virus that can lead to an often fatal brain disease, according to a study published in the January 27, 2016, online issue of Neurology® Neuroimmunology and Neuroinflammation, a medical journal of the American Academy of Neurology.

    They found people converted from being anti-JCV negative to anti-JCV positive at the following annual rates: 10 percent in the German group and nearly 9 percent in the French group. Those rates are much higher than the rate of 1 percent per year for the general population and for people with multiple sclerosis not treated with natalizumab. In the German group, 43 of 339 people who were initially anti-JCV negative tested positive for the antibodies during the study. In the French group, 41 of 243 people who were anti-JCV negative tested positive for the antibodies during the study. In people who were anti-JCV positive already at the beginning of the study, their level of antibodies also rose over time. Treatment with natalizumab was associated with a 13-percent yearly rise in the level of anti-JCV antibodies in the blood. In the German group of 525 people, those considered medium risk of PML grew by seven people, representing 5 percent of the group at the beginning of 15 months, increasing to 6 percent. The high-risk group grew by 14 patients, initially representing 22 percent of the group, increasing to 25 percent."


    • Woooow!!! I deleted unintentionally my previous comment (dial the cellphone is sometimes problematic), but really I was also puzzled (I understood otherwise), if EBV increases the production of TNF-a, how it fits in the event "EBV-MS," and why treatments that suppress TNF-a, as for rheumatoid arthritis, unlike take the MS worse?

      I know many answers may only arise when Charcot 2 start producing data for analysis, but they are interesting points for reflection…


  • I am an MSer and have been completing questionnaires for research on MS. I have noticed some of the questions are ambiguous and I could answer them a few different ways depending on how I look at the question. They need clarification.
    Also there is not enough range of answers for a few of the questions.

    Do I let the researchers know my feedback?
    I am a postgrad researcher myself but in a different field of study.

    • I guess the answer to my question is yes.
      However, I did complete various questionnaires for a government department last year. I had the same problem then with ambiguous questions and limited choice of answers. I contacted the research designers last year to diplomatically explain and they said it's too late as other people had answered the questionnaires.
      The problems with research design.

    • I've also had plenty of issues with ambiguous questions in many surveys, and problems with a lack of answer options which are true for my circumstances. I have also been asked, as a PwMS, to review surveys before they are circulated/uploaded for completion by patients, and had similar answers given – that the content/questions/answer options can't be changed as the surveys have to be consistent with previous "editions". This is especially the case with ongoing studies such as NARCOMS. I had major issues with completing the very first NARCOMS survey I did after registering, and the survey questionnaire forced inaccurate answers because suitable options were just not available.

      Unfortunately, ambiguous questions produce inaccurate answers, and then the results from analysis of the survey is inevitably flawed to some degree. This is also made even worse with surveys using skip logic, where responses to one or more questions sends the respondent down a path which is inappropriate to their own personal MS circumstances or journey.

      Much more pre-testing with REAL PwMS is essential – people with academic knowledge but without MS cannot realistically pretend to be PwMS when they attempt to set up questionnaires. This is why so many PwMS have problems with these surveys. (a bit like the useless EDSS really…)

    • re.. "Much more pre-testing with REAL PwMS is essential."
      I agree with this.

      re…"Unfortunately, ambiguous questions produce inaccurate answers, and then the results from analysis of the survey is inevitably flawed to some degree".

      The MS research I participated in hopes to form part of an academic article – in my eyes there will be questions over the research findings.
      As my statistics lecturer once told us – Junk in junk out.

  • Mouse Docs – I've got a question about a vaccine and autoimmunity:

    I am thinking about getting a vaccine agains shingles (I got shingles repeatedly).

    Is it advisable or can it make my autoimmune disorders (I've got a few) WORSE?

  • It would be good Team G if a post could be done about GP's referring patients suspected of MS or neurological signs to a neurologist – when to wait and when to refer.
    The GP's that do not have the depth of knowledge to know certain red flags and neurological signs and symptoms. I understand GP's will probably have limited knowledge of some things as they know a little about a wide range of medicine.

    MS is not always the slow burn and as you say Team G 'Time is Brain', so it's important if GP's are unsure of signs and symptoms they feel confident and welcome to telephone a neurology department at the hospital and ask a consultant neurologist. If in doubt ask. A GP asking a GP colleague may not be the best other option.

    • The latest NICE pathways documentation (http://pathways.nice.org.uk/pathways/multiple-sclerosis#path=view%3A/pathways/multiple-sclerosis/diagnosing-multiple-sclerosis.xml&content=view-node%3Anodes-when-to-refer-to-a-consultant-neurologist) – is comprehensive in this and mirrors their guidance on MS back in Oct 2014.

      The latest versions of NICE guidances is something which doctors are expected to keep abreast of. If you're a GP this will mean quite a bit. In my experience, I find our GP colleagues ?MS in young people often, when faced with neurological symptoms. What I'm also starting to see a lot of are referrals from practices following a brain scan with a report ?demyelination.

    • Thanks. Though I have come across four GP's in the UK (some of these very recently) that have trouble recognising some symptoms as neurological. This is quite a concern I feel. This included my father when he showed several symptoms of a TIA.

    • Many years ago I was an inpatient in my local hospital that was staffed by Barts doctors and nurses. I was having a severe exacerbation at the time. My consultant told me not to tell the medical students sent to me one by one that I had MS. They asked me if I was diabetic, blind and thyroid problems. I assume if these students became GPs they would be better prepared with some knowledge of diagnosis. This is why we should never refuse students at our consultaions at the hospital or GP practice.

  • If at ECTRIMS this year it was noted that long term rituximab didn't prevent onset SPMS, is it safe to say that orceliuzmab won't either, Natalizumab doesn't, it only leaves alemtuzumab and HSCT as potential to stop progression to SPMS? ( I'm not saying that the other drugs didn't delay onset SPMS, but didn't prevent it)
    So the inflammation process can be managed but we still have nothing for progressive.

    But orceliuzmab has published some very small cohort results for some success in progressive disease, contradictions as effectively they are the same drug?

    • They all point to being able to stop relapse/inflammation related disability. Interpretation beyond this is pure speculation.

  • Are there many pwMS who take vitamin D tablets and have trouble getting their level above 100nmol?

    I changed from tablets to an oral spray, spray on the inside of the cheek of my mouth. It goes into the bloodstream and not the digestive system. My level has gone up much more than the tablets in a matter of weeks.

    Maybe this might work for other pwMS but with low level vit D??

    My other question.. is there any advantage that the vit D is absorbed through the digestive system?

    • I use 2000 IU sublingual tablets for Vit D3 – just pop one under your tongue and let it dissolve. Works fine for me and easy to adjust the dosage at 2000 IU per tablet. I get them from one of the big on-line suppliers – very affordable compared to buying locally, where the only option is the usual little footballs.

    • Bumkum I'm afraid. This is a case of rewriting history after the event.
      There are numerous reports of TNF blockers inhibiting EAE and can hold my hand up saying I did that. After TNF blockers made MS worse they did nothing or makes it wose

  • Is there any research on how tight clothing such as tights might irritate nerves in MS?
    I've noticed when I wear thicker tights in winter by the end of the day when I take the tights off my legs feel much better.
    I really like slim fit and jeggings type jeans but I have to find pair which are not too tight fit. I know there was something in the news paper about skinny jeans and compressing the thighs can cause nerve damage.

    • From the MS Society hot and cold temperature factsheet.

      "Some people also find that tight clothes feel painful, and
      might trigger muscle spasms. So tight-fitting thermal
      wear, for example, might not be helpful. Layering looser
      clothes might be a better solution."

    • I find slim fit trousers improve my walking, as do skintight sports shorts and, in particular, a made to measure orthosis. Loose clothes, on the other hand, make me feel like a jellyfish.

    • No news I'm afraid, although I suspect it will approved for active MS, But it depends on how the data is dressed up as well as how the side effects are presented. Hopefully there will be no cases of PML before (and after) it gets assessed as one suspects it will be a matter of time.

  • Are there grounds for negligence? If DMT's for MS are not offered or discussed when a patient is on their second severe MS relapse (recorded by hospital) and MRI scans show lesions that fit the MS criteria.

    Would doctors 'wait and see' with other serious medical conditions? I expect not.

    • There will be grounds for negligence if in 20 years time the patients get cancer. That's why doctors are damned if they do and damned if they don't. Ambulance chasing lawyers are making mega bucks. "Would doctors 'wait and see' with other serious medical conditions?" they do and quite often it's the correct decision.

    • Re: "Would doctors 'wait and see' with other serious medical conditions?" they do and quite often it's the correct decision.

      Please give example of these serious conditions I would like to know, (including after two serious relapses).

    • This needs to be tested. After launching our 'Brain Health: Time Matters' policy document an MSer contacted me to find out if I would represent him in his case against his neurologist and NHS Trust. He believes the delay in making the diagnosis and getting him onto a DMT has resulted in brain damage and has affected his career. I had to say no as I don't do medicolegal (class 2) or private (class 3) clinical work. I am not sure what has happened. However, in the medicolegal space you get judged on the what the herd, or the majority of your peers, are doing. The fact that the UK is an outlier in terms of its DMT prescribing when compared to other countries doesn't make a difference. Therefore it would be touch and go in the UK legal system. It would be very different outside the UK.

    • Why do some neurologists offer DMT's and some don't even discuss DMT's to those who fit the RRMS criteria?
      Is this lack of basic training?

      I would say the important thing is to see an MS specialist neurologist as soon as possible. The problem is this is all good with hindsight but when the patient does not have this knowledge then then can't help themselves. MS is not always a slow burn.

    • The MSer that contacted Prof G could go to the GMC and Parliamentary Ombudsman. The MSer needs to have made a complaint to the NHS Trust.

    • The case you mention Prof G of the MSer with delay in diagnosis and getting him on a DMT a similar thing happened to me. I expect there are more than a few RRMSers like this.

  • Is there a service that helps patients with neurological conditions who suffer from PTSD from a traumatic experience due to their condition?
    What I think could be suitable would be a
    neuro- psychiatrist that does psychotherapy. So someone with extensive knowledge of neurology, psychiatry and psychology but also able to do psychotherapy or counselling. Not just medication.

    Psychotherapists and counsellors I doubt would have the neuro knowledge.

  • I have been reading about vitamin D deficiency and severe deficiency may have frequent infections. Can I interpret that to also mean severe deficiency increases risk of infections? I thought this is interesting as infections can trigger relapses. Also with the viral hypothesis of MS.

    " The symptoms of vitamin D deficiency are sometimes vague and can include tiredness and general aches and pains. Some people may not have any symptoms at all.

    If you have a severe vitamin D deficiency you may have pain in your bones and weakness, which may mean you have difficulty getting around. You may also have frequent infections. However, not everyone gets these symptoms."


    • The concern over severe deficiency are the effects on the bone which often overrides that of increased susceptibility to infections.

  • We have nearly reached the end of Feb and 2016 has seen a dull start to MS research. This is not the fault of the blog, but I certainly feel MS research is in the doldrums. Where are the really big research breakthroughs e.g. Finding the cause? When willee hear about the results of repair trials or neuro-protection trials? There's been an awful lot of mediocre research posted which does nothing in terms of helping those currently with MS. There must be some better research hews on its way!

    • Not the fault of the blog…Maybe it is…we are busy with teaching commitments and grant applications and so writing for blog has not been as informative as it could be. However there are only so many hours in a day and we can only wok with what we have got.

      However, you failed to get excited by ACTRIMS 2016 so next you have to wait until the AAN in April in Vancover and then ECTRIMS…but as pharma have made no more announcements to their shareholders what is going to be new in the near future.

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