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  • Do sensory symptoms (no motor symptoms) in all four extremities indicate extensive but subtle cord damage, even if the MRI does not show cord lesions? Confirmed MS based on brain lesions and OCBs.

    • Isn't the risk with DMF PML ie JC virus? Not infections generally? My GP reckons that everyone has low lymphocytes! Makes me think the normal distribution isn't that normal!

    • This is what I pulled off the web, it is correct?:
      A low lymphocyte count makes it hard for your body to fight infections. You may get infections caused by viruses, fungi, parasites, or bacteria. (National Institutes of Health)

  • pwMS taking Tecfidera and have low lymphocytes should they be considering a pregnancy diet? To help derisk some infections.

    • Sorry, comment posted earlier in reply to wrong post (see above)
      Can we do a very unscientific straw poll, how many people have low lymphocytes? Mine are typically 0.8 to 1.0 on no treatment. Normal 1.5 to 4.0 anyone else not normal?

    • 0.26 at last blood test. However, I was on fingolimod and have no record of what it was pre fingo treatment. Currently waiting for the count to return to 'normal' so I can have Lemtrada and wipe them all out…

  • I am now convinced that I am at high risk of experiencing permanent worsenings in my progressive MS following minor viral infections. Would there be any way to combat this, some kind of antiviral? This would be the equivalent of an effective DMT for progressive MS to me.

    • Morrow et al. The effect of Fampridine-SR on cognitive fatigue in a randomized double-blind crossover trial in patients with MS. http://dx.doi.org/10.1016/j.msard.2016.10.011

      Cognitive fatigue (CF) is a common complaint in persons with MS (PwMS). Fampridine-SR improves ambulation, fatigue and endurance, due to enhancing action potential formation by blocking potassium channels in demyelinated axons. Thus, through this same mechanism, it is hypothesized that Fampridine-SR could improve CF.

      To determine if Fampridine-SR objectively improves CF in PwMS

      Sixty PwMS of any type with CF, defined as 3 or less correct responses when comparing the last third to the first third on the Paced Auditory Serial Addition Test (PASAT), were recruited from a tertiary care MS clinic in London (ON) Canada. Subjects also had to be between 18–64 years, inclusive, not had a relapse

      in the last 60 days or corticosteroids in the last 30 days, EDSS 0.0–7.0, and no other diagnosis that could cause cognitive impairment. A randomized double blind crossover design was used: subjects were randomized to either placebo or Fampridine-SR for 4 weeks, then after at least a one week washout, received the opposite treatment. Subjects were assessed before and after each treatment block. The primary outcome was the PASAT CF score after treatment with Fampridine-SR compared to placebo. T-tests and chi-square were used to compare demographics between the two groups (placebo-Fampridine-SR vs. Fampridine SR-placebo). Treatment effects were assessed using factorial ANOVA, with treatment (Fampridine-SR vs. placebo) and time (before and after treatment) as within-subject variables.

      Of the 60 subjects randomized, 48 completed the study; three were removed due to an adverse event while in the treatment arm (one due to relapse while on placebo, one due to urinary retention and one due to dizziness and headache while on Fampridine-SR). The subjects had a mean age of 46.5 ± 10.0 years, education of 13.6 ± 1.9 years, and were diagnosed with MS 10.6 ± 9.6 years ago. The majority were female (46, 76.7%), had relapsing remitting MS (41, 68.3%) with median EDSS was 3.5 (range 1.0–7.0). There were no significant demographic differences between the two groups. The treatment x time interaction within the factorial ANOVA on PASAT CF scores was statistically significant, F(1, 45) = 8.28, p = 0.006, suggesting there is a difference between the treatments (placebo vs. Fampridine-SR), over the course of the study. An evaluation of the mean scores suggests, however, that subjects saw a greater improvement when they were given the placebo, than when they were given the active medication. Similarly, individuals showed a greater increase in their information processing speed (as measured by the PASAT) over the course of treatment when they were given the placebo, as compared with the active medication F(1,45) = 4.17, p = 0.047.

      Although this small pilot study does not suggest that Fampridine-SR results in a statistically significant improvement of CF in MS patients, as compared to placebo, individuals demonstrated an improvement in both information processing speed and CF, suggesting further studies are warranted.

    • All this study is showing that Fampridine does not appear to help slowed cognition in MS. The study is however too small to draw conclusions, i.e. underpowered.

  • Woke up this morning worried about the future, have a 'to-do' list:

    Ask Dr K for refresher on Clabribine, dosing, where could I get this in an emergency if my Natalizumab was no longer available. And the world was ending.

    Buy canned goods

    Buy bottled water

    Fill out paperwork and apply for a permit to buy an Austrian product that rhythms with clock.

    I jest slightly ( I hope) 🙂

  • Cladribine is off label for MS in the UK. Yet some people have managed to get in on the NHS. Rituximab is also off label. People who have been to Mexico for HSCT are recommended to have this when they get back – only 3 infusions. Neuros are saying they would give it if it was not off label and patients will have to wait for Ocrelizumab, which will do the same thing. Are patients not at risk and should they not follow the recommendation given by their HSCT doctor.

    • Cladribine is off label in the UK….maybe we should start everyone off on CLAD and if it fails then try one of the others. What do you think? It would save the NHS alot of cash…hopefully not lost in legal fees.

      As to listening to Mexican doctors…Maybe if have the 3 infusions and you don't need the HSCT…the data is out there.

  • Nearly half of all trials run by major sponsors in past decade are unpublished
    BMJ 2016; 355 (Published 04 November 2016)

    The drug company Sanofi has failed to publish results for almost two thirds of the clinical trials it has conducted in the past decade, a major new tracking service has disclosed.

    TrialsTracker, a new automated service launched to shine a spotlight on drug companies and universities, found that nearly half of all trials run by major sponsors in the past 10 years were missing results.1

    Sanofi, the multinational drug company based in France, had the highest number of missing results (285 missing results, 65.5% of those conducted). The next highest number of missing results was from Novartis Pharmaceuticals (201, 37.6%), followed by the US National Cancer Institute (194, 34.8%), Assistance Publique-Hôpitaux …

  • Yes it is clear that companies do not always publish results. Sandi has signed up to providing access to trial data on things that have been licensed since 2014.. I wonder if that route will give us access to data.

    I have tried to get access to an unpublished trial I believe made people worse. My request was refused.

    • I am just back from Mexico. I have RRMS but my attacks have never been within the 2 year guideline from NHS so have not been allowed a DMD. I fought hard to get tecdifera but my case was rejected as I have benign MS or infrequent relaspse MS. I kept reading on here that time is brain so I went for HSCT as after all one bad attack could be devastating. Neuro was supportive and I will get the ritux privately throu him. I would prefer not to have to pay more. I am a cheap MS patient as the only MS drug I take is baclofen.

    • Joanna have you had a second opinion from an MS neuro? I would of thought you could get an injectable DMT on the NHS, as for CIS.

  • I thought this paper was interesting
    Prior regular exercise improves clinical outcome and reduces demyelination and axonal injury in experimental autoimmune encephalomyelitis
    J Neurochem. 2016 Jan

  • Shift.MS sent through an email asking me to vote for them to get money for the MS map. In reading their speil about MS they said that only 30% of people diagnosed with MS are still working 5 years post diagnosis. Is this still the case?

  • Virgin Care, has won a £700m contract to deliver 200 types of NHS and social care services to more than 200,000 people in Bath and north-east Somerset. Guardian.com

  • Cannabis trans-dermal patch contains CBD (and no THC apparently ?), for nerve pain, would this be any use for pwMS?

  • New kid on the block Amiselimod, fingolimod-like drug.

    Lancet Neurol. 2016 Oct;15(11):1148-59. doi: 10.1016/S1474-4422(16)30192-2. Epub 2016 Aug 16.

    Safety and efficacy of amiselimod in relapsing multiple sclerosis (MOMENTUM): a randomised, double-blind, placebo-controlled phase 2 trial.

    • Just another kid it is still just a version of fingolimod. They will aim to convince you it is safer but is it. They should do a head to head against Fingo.

    • I don't know if it was me sometimes when we are launching things eg. when using a phone we touch the delete button which is next to the publish button, there is no option to confirm the delete and so if wrong it has gone. There was a load of spam messages yesterday that I deleted on mass I wonder if yours was in there. If you have a copy send again.

      I do not get the mesages so I can't check, ProfG keeps a record so only he can see what was sent.

    • To create a vaccine for the EBV would benefit the whole world (except for the pharmaceutical companies!) I have just read this from the UK Cancer research site –
      "Each year 200,000 cancers worldwide are caused by Epstein Barr Virus (EBV). We want to find a way to reduce that figure to zero."

      So our Grand Challenge is to:


      If an EBV vaccine would not only help reduce these cancers and potentially MS would a government funding project to get a vaccine up and running not be essential. EBV is thought to be the mystery illness causing other mystery illnesses (especially autoimmune) like MS crohns and arthritis etc. A governent should be trying to prevent illness rather than focus on how to treat it when it arrives.

      Read more at https://www.cancerresearchuk.org/funding-for-researchers/how-we-deliver-research/grand-challenge-award/challenge2#wHxFls53CoyVHlq7.99

  • I've been made aware of how important it is for pwMS to keep warm when the weather is very cold. As keeping warm can help stop colds and flu, pneumonia, stoke and heart attack. These problems are more likely for the disabled, those with a long term health condition and over 65yrs.
    In very cold weather there is a service by the British Red Cross that can check to see that someone (yourself or someone else) is safe, well and warm in their home. A helpline number and something I will keep in mind. I don't work for the charity or have any connection with them.

  • Prof G, I am very grateful for the Brain Health document. I have sent it on to a neurology team (outside of London) that did not mention or offer me DMT when I was experiencing my second severe MS relapse (I have many brain and spine lesions).

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