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    • I would also be keen to know the answer the this question please. Is this something my own consultant could prescribe on the NHS? Thank you!

  • Will the recent EBV study lead to treatments for people with MS? Or is the focus mainly on preventing MS through vaccination? Or both? And if so, what will these treatments look like?


  • In previous trials. Simvestatin has shown to reduce brain atrophy but not neuro filament light chain levels.

    Do you think as with RRMS we can get good MRI MRI results in progressive MS I.e reduced brain atrophy, much like reduce relapse rate in RRMS but doesn’t have to much effect on progression?

    But both don’t really show any benefit on progression.

    I suppose reduced brain atrophy should technically be beneficial, but if NfL levels don’t change, then axons are still being lost and the reason for reduced brain atrophy is another’s mechanism all together.

    Brain atrophy don’t really mean a lot if axon are still being damaged.

    • serum nfl is a marker of acute inflammatory activity only (relapsing component of the disease). people with inactive spms won’t have raised nfl levels in the first place. if they do it means they should be on siponimod.

  • Hi
    Is anyone recording the difficulties experienced by PWMS following Covid jabs?
    I had my fourth this week and was totally incapacitated. I’m fairly mobile (use a crutch for balance) but could not get out of bed! This was the situation for three days.

    Without my wife to help I would’ve laid in my own waste for the duration, without food and water.


    • My experience was the booster (jab #3 here in the US), got a stronger response (than the first two jabs) of aches, tiredness and perhaps slight fever off and on, for 3 days; same with my non-MS wife. I think such is common at least with the Pfizer-Moderna vaxes. And typically (you’ll see this written about frequently), any stressor like a cold, the flu, increased body heat due to exercise or being in the sun, for example, may cause a temporary increase in or return of symptoms you’ve already had, until the stressor is removed. I’m sure Dr. G talks about this somewhere in his MS Selfie info site. Good Luck.

  • Any good ideas how to deal with increasingly bad typing?

    Any non-standard keyboards to recommend? Voice to text is a mediocre option because a lot of what I do for work is very jargon rich….

  • I was diagnosed with RRMS in 2009, changed to SPMS in 2018. I have all the classic symptoms fatigue, muscle weakness, balance issues etc. but my lumber punctures have always been clear. I have never taken a DMT (long-story). I recently requested Siponimod but was turned down as there has been no new activity on my MRIs but my mobility is continuing to decline. My neurologist regularly states we need to keep an ‘open mind’ re my diagnosis given the lumber puncture results. Do you think it would be helpful to get a second opinion to rule out other possibilities or should I just accept my decline?

    • we cant give advice but you can always get a second opinion, remember neuros hands may be tied by NICE guidelines of what they can or cant do, Also keep an eye out for clinical trials

  • Is there any hope that anyone is going to put some serious effort into finding an actual Cure – lying rotting in a bed is unbearable and we are not even given the dignity or respect enough to be able depart with dignity

    • because of how the clinical trial system works, if someone found a cure tomorrow it would be ten years at least (probably much longer), before a doctor was offering it to you. so don’t get your hopes up.

      • I would encourage participation in clinical trials for this very reason. I’ve had patients on natalizumab, alemtuzumab, siponimod well before their licensing. When natalizumab and alemtuzumab were being trialled the option was interferons!

        • I can see why Doc, when the options that were available were very limited. It is more of a conundrum now though as patients have more (non-trial) drugs available to them. A case in point, is a patient going to risk being put on the control arm of a trial and potentially halt their pursuit of a higher efficacy therapy by 2 – 3 years? this could be valuable time wasted. I have considered this myself as an anti CD20 patient experiencing some mild worsening. Pursue sizomus or HSCT? if HSCT was not an option, the decision becomes much easier

          • The way relapsing-remitting trials are now designed is that it is an active drug on the comparator arm. It’s no longer placebo and will not get authorisation to proceed. For progressive MS where there is a question over whether anti-inflammatory drugs (this is how all currently available DMTs work) work in this stage of disease, the comparator is a placebo drug. This may change in the future as more drugs are licensed in progressive MS. You have to go in early with the best options available to you at the time. Waiting 3years in terms of MS makes a lot of difference…

    • Nice link! Wasn’t brain swelling due to inflammation? So antibodies can cause inflammation and swelling and brain fog as a consequence? Another point for sizomus trial 🙂

    • My prediction is never….To get licencing you have to have a package and this costs millions….more than the trials done will cost. They are only phase II and if they work then you need one possibly two phase III trials, who would fund the second trial?

      Best you can hope for is that the studies lead to a change in neuro behaviour. I think they could be done in UK but it would be off-label. Could it be done yes approvals have occurred during COVID e.g. steroids but the rest have companies behind them…

  • I was diagnosed with RRMS aged 38. I remember going through a few years when I was aged 20, feeling
    extremely exhausted, I wanted to be asleep in bed. Then I recovered it seemed and worked in a job travelling extensively and working long hours/ nights, for four years. After that worked normal office hours.

    Did anyone else have a period of extreme exhaustion many years before their diagnosis?

    • Yes, about 14 years before I was diagnosed for about 4-6 months. Had some tests that found nothing, and just before more serious tests were done I recovered and it was passed off as some post-viral syndrome.
      It wasn’t glandular fever because I had already had that about 15 years earlier.
      My main symptoms that eventually led to diagnosis was again extreme fatigue and brain fog.

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