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MouseDoctor

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    • Yes, I’m very curious about this too. Alternative treatments Dr Internet include echinacea, cranberry, astragalus – but don’t suppose they would win Dr Mouse’s endorsement.

    • What lifestyle modifications are recommended for EBV-associated cancers? That’s probably the place to start, although I doubt there is much more than “get lots of exercise.”

      • What are good choices for maintenance therapies following Mavenclad, for those who are NEDA but prefer an add on?

        • “What are good choices for maintenance therapies following Mavenclad, ”

          There is no such thing as “mainteenance therapies”…that keep ms away…All we can do is watchfull waiting.

          Adding DMT + Mavenclad does not equal out to a cure for ms.

          • ANON – “Adding DMT + Mavenclad does not equal out to a cure for ms”…..correct, but not sure that was the question.

            TERI is an effective modulator of the immune system and thus theoretically could be used as a “maintenance” therapy after an IRT. TERI seems better as a second line DMT anyways.

            I used TERI in-between switching from OCR to CLAD. I waited for the first sign of B cell repopulation (10 months after last OCR infusion), then I started TERI, which did effectively keep my CD19 B cells well below baseline (hence extending the therapeutic duration of OCR). I stopped using TERI about 3 months before starting CLAD (without doing the repaid elimination protocol).

            During the transition (18 months), I had no major relapse or new enhancing lesions.

            Based on my experience, I would be comfortable using TERI as a maintenance therapy after an IRT. Unfortunately, me and TERI did not get along in other ways.

      • Is there any progress with MS disease breakthrough markers like NFL ? that are in development or that might be useful to assist with this decision? looking at being proactive rather than reactive with treatment.

    • Hi bluebird,
      Just read your question ‘Does anyone have fampyra provided free on the NHS?’
      I have been prescribed Fampyra by The National Hospital For Neurology in Queens Square. I may be wrong but I think it might be the only prescribing hospital in England for this drug.
      Its made a big difference to my life, and needs to be approved by NICE for use in England. The argument that it is not cost effective is nothing short of an insult for pwMS.

      • Thank you, yes I had heard it rumoured that it is precribed on the NHS @Queen’sSquare – I have appealed to my NHS Trust without success so I wonder how QS achieve that? I pay c£200/month which as you say is a bit of an insult as it definitely helps me 🙁

        • It is my understanding that the neuros do additional work for the hospital, and the money they earn for said work is used to pay for the Fampradine they prescribe for patients who meet their walking speed criteria and are judged to be responders after the two week trial period.

          • Ah, interesting – sounds like a good arrangement. I’m aware of someone several years ago who was buying ampyra from the US at a much lower price so might look into that.

      • The reason it is not widely prescribed is the fact that it is not considered to be cost effective in England.
        In a recent medical appointment my therapist said there are discussions taking place between neurologists and the NHS in England in order for Fampradine to be widely prescribed for pwMS.
        This article gives hope, as does the work being done to try to change the current unfair system.

        https://www.ms-uk.org/calls-fampridine-be-available-nhs-england-ms

        I am have been taking Fampradine for 9 months and it has improved many aspects of my mobility. If taken correctly the risk of seizures is listed as an ‘uncommon side effect’, and the prescribing criteria is pretty tight with the full medical history taken into account.

        • Thanks Rachel – I’ve taken it for several years, and it definitely helps otherwise I wouldn’t continue to take it. It has many positive knock on effects not least helping to stay in employment and therefore pay taxes. Although I’ve paid up every month I’ve only recently multiplied up by 12 (£2,500) then by 7 to get to £17,500 – that’s a substantial amount to have paid, and quite shocking. My MP tried to help me access it on the NHS several years ago – with no success and quite an illogical response from my health authority whose strapline ran something like ‘your good health is our concern’ – pull the other one!! I feel a letter to my new MP coming on…

  • Hi and thanks for the Q&A.
    Here’s my question: are there differences between masitinib and the 3 BTKi drugs that are currently being developed?

  • Is the EDSS measure of out dated?

    Do you think there should be another gauge if disability for people with MS?

    There’s surely a way to measure other factors in MS in a score based system however one that covers more than mobility.

    We are in 2021 now, surely measure of disability has moved on, leading to a better treatment approach

  • Hello.

    Has the Octopus study begun yet?

    Thank you for your time, and may your day contain much aha’s and not so much nuh-uh’s.

  • Chest tightness (exactly like the MS hug) has become the number one complaint in forums either of after Covid or after vaccine patients. What do you think is the mechanism that activates this neuro-muscle tightness?

    It really should be studied, as patients are concerned about heart issues or thrombosis, run a ton of heart examinations to end having a “it’s all in your mind” dismissal.

  • https://www.bmj.com/content/375/bmj.n2635

    So it looks like the phase III trials for the Pfizer vaccine may have been partially unblinded and contained falsified data… I’m assuming this information is credible since it’s published in the BMJ and not on some conspiracy website. I guess we should ask for Moderna for the booster shots?

    • The results of use of Pfizer vaccine has been reported in umpteen vaccine studies not controlled by Pfizer so I would not worry too much.

    • With hundreds of millions (possibly billions by now) of people vaccinated with Comirnaty by now, I could not care less about the small part of the Phase 3 that is under question.

      And indeed, I got third shot this week. Not terribly hopeful I will antibodies now but probably better than nothing.

  • I know some anti viral trials have been carried out for MS. However do you think this area or research requires more trials?

    Or is it possible that if EBV is the cause of MS. Then the mechanisms of damages are already in place and anti virals against EBV won’t stop the damage being caused.

    The data suggesting EBV is the cause of MS isn’t matching the movement on anti EBV therapy’s

    • Makes no sense to me, surely there is some kind of confounding factor at play? The population of people who never drink alcohol is pretty small, maybe they are less likely to be social and therefore less likely to be living a “brain-healthy” lifestyle in the first place?

  • What’s you thoughts on Co q10 for MS?

    There was an article published recently, also in MS news today that it reduced fatigue and depression in MS. I looked again to do abit of research about it and it’s gone.

    I wasn’t sure if it was the same study from 2015 stating co q10 is beneficial.

    The only reason I was looking is I’ve been getting tired lately and more depressed and brain fog. Which is really effecting me at the moment, so frustrating.

  • Paresthesia from demyelination, causing altered sensation – Burning, tingling, formication, pain etc etc. If the sensations are changing, say from tingling to formication, at the same locations, would it be a sign of disease activity?

  • MD, any thoughts on this paper? Does it seem plausible to you?

    https://pubmed.ncbi.nlm.nih.gov/34740381/

    “Results: Acrolein was substantially increased in inflammatory lesions of MS patients and EAE mice. Levels of the dipeptide carnosine (β-alanyl-L-histidine), an endogenous carbonyl quencher particularly reactive towards acrolein, and the carnosine-acrolein adduct (carnosine-propanal) were ~ twofold lower within EAE spinal cord tissue. Oral carnosine treatment augmented spinal cord carnosine levels (up to > tenfold), increased carnosine-acrolein quenching, reduced acrolein-protein adduct formation, suppressed inflammatory activity, and alleviated clinical disease severity in EAE. In vivo and in vitro studies indicate that pro-inflammatory microglia/macrophages generate acrolein, which can be efficiently quenched by increasing carnosine availability, resulting in suppressed inflammatory activity. Other properties of carnosine (antioxidant, nitric oxide scavenging) may also contribute to the therapeutic effects.”

  • I asked on last months q+a about steroids and why i get such a lazarus effect whilst on them but symptoms all pop back up and fall of the edge of a cliff with weakness about three weeks later. You said it was likely a mood lift rather than anything else but i dont think a mood lift would sort my eye sight, twitches, weakness and sensory issues. Im about to undergo hsct at barts and was wondering if there could be another action taking place with the steroids ?

  • Since my lymphocytes have only moved from 0.35 in my post-final–Cladribine-treatment FBC to 0.42 over four months later, I am still being extremely cautious around exposure to other people (especially the majority who no longer wear masks anywhere). I’m due for both COVID booster and flu jabs but am confused as to whether they would have any meaningful effect with such low lymphocyte levels. I also assume I need to carry on being extra careful to avoid infection. Any thoughts/clarification about these two issues would be welcome. Many thanks for this, and the blog in general.

  • While we know that those on anti-CD20 don’t produce antibodies, that doesn’t necessarily tell us whether vaccines are effective. I know there are currently no published data in terms of vaccine efficacy for those on anti-CD20 6+ months after vaccines have become widely available.
    I saw this early release this past week — can we draw any conclusions for those on anti-CD20? The two buckets in Table 3 that seem especially relevant to anti-CD20 are “Hematologic malignancy” (what proportion of those people are on anti-CD20?) and “Organ or stem cell transplant” (those people are in particularly bad shape and often are compromised across B and T cells?).
    https://www.cdc.gov/mmwr/volumes/70/wr/mm7044e3.htm

    • I would guess vaccines focus on T-cell responses than antibodies will have a better result. AZ’s on par with mRNA vaccines on T-cells if not better?

  • Not a question just to say thank you. I delayed ocrelizumab and had results of anti spike serological test and I have a good seroconversion with a level of about 30 times the cut off value (2 mRNA vaccine doses)

  • Is there a normal range for NFL levels?

    Treatments reduce these levels. But do they normalise the levels?

    And does brain atrophy correlate in line with NFL levels? For example brain atrophy normalised however NFL levels still high for the age of the person.

  • Hello. I have two very important questions (well, important to me anyway).

    First question is who owns my MRIs, and is it okay to ask my neurologist for copies of the reports and/or CDs of the scans?

    Second question is whether it’s important to get MRIs in the progressive phase, and if so how often?

    Thank you for your time

    • I do not know? I would have thought you can ask for your scans…they can only say no if you ask, if you dont ask you dont get

  • Dancing molecules’ successfully repair severe spinal cord injuries in mice

    (1) The severed extensions of neurons, called axons, regenerated; (2) scar tissue, which can create a physical barrier to regeneration and repair, significantly diminished; (3) myelin, the insulating layer of axons that is important in transmitting electrical signals efficiently, reformed around cells; (4) functional blood vessels formed to deliver nutrients to cells at the injury site; and (5) more motor neurons survived.

    Will this fix our swiss cheese brain also 🙂

    https://medicalxpress.com/news/2021-11-molecules-successfully-severe-spinal-cord.html

  • With prof G gone, who will be our champion and push forward the banner of EBV=MS if any? Since it is a virus I don’t know, maybe an immunologist wink wink?

  • I am 37yo, on Ocrelizumab since 2018, had covid on March 2020 – mild form, no hospitalization. No detectable antibodies after natural infection. Got Pfizer on April/May 2021 (first shot 12 weeks after Ocrevus infusion). Again, no detectable antibodies. Had Ocrevus again on August 21st. During the past weeks and months, I have been quite exposed to risk of infection – after months of being careful, I decided to return to social life, plus I work as a teacher and thus I am constantly in touch with students (wearing a mask though).
    I am currently eligible for a third vaccine shot. Should I wait until February/March (when 6 months will have passed since the last Ocrevus infusion) to increase the chances of developing some antibodies, or should I just get the booster now? What do you suggest? Thanks in advance for your attention and for all the useful knowledge sharing work you do through this blog!

  • Here is an interesting article about how a woman’s own immune system cured her of HIV. She is only one of two known cases. Sad to say MD1, the researcher theorizes she mounted a super charged T-cell response (probably didn’t even look at her B-cells).

    The article also discuss two male patients cured of HIV by stem cell transplants, but from donors with a know genetic immunity to HIV. Very interning stuff and I have to think some of this HIV research can be extrapolated to MS, particularly if MS is some type of response to a chronic viral infection. The answer might just be in our DNA.

    I remember MD1 posted a few times about genetics and MS treatments. Either way, hope you enjoy the article. Already missing the musings of Prof….you know who 🙁

    https://www.nbcnews.com/health/health-news/womans-immune-system-possibly-cured-hiv-rcna5610

  • Apologies if this is already answered somewhere, but I couldn’t see it spelt out. I’m slightly confused about the covid vaccine third dose / booster distinction and timing.

    I’ve been receiving ocrelizumab since August 2020, currently 8 months since my last treatment, and 9 months since my second Pfizer dose. My plan had been to schedule a booster jab in mid December, approx 9 months after the last ocrelizumab treatment. Now, further reading suggests I should be eligible for both a third dose *and* booster, and that this next jab should be considered a third dose, with a booster to come later. What then is the optimum timing for both third dose *and* booster jabs when on ocrelizumab?

    • The truth is we dont know but 9 months from last dose gives a reasonable change of making an antibody response and if you make one then it can be boosted. The problem has arisen because they have only just decided to give the third dose and in many cases it is at least six months since the second dose.

      • Could I echo this confusion? I completed my Cladribine treatment (2nd year) at the start of May but have remained in Stage 3 lymphopenia. I am not officially on the list of those entitled to a third (as opposed to booster) vaccination, but presumably this is what should be happening if I get vaccinated now, which I am due to be – to have the possibility of a booster once lymphocytes have recovered to acceptable level. Does that sound right?

  • Is there any way to access previous posts from ProfG? Forgive me if this has been addressed elsewhere….or if I am experiencing a case of user error in not being able to locate them. I have a neurological disease and stuff.

    • Not that I want to read from ProfG, however search funtion of this site is not working very well as the results are not ranked by relevance/date/etc. I usually try to search old posts before asking questions but the search function here is too unreliable to do this.

      • Yes because profG has removed all his posts the search function which was never great, is useless…..it;s been gutted:=(

  • I was wondering why I can’t find any of Prof G’s old blog posts. Were these removed after he left? If so why? There is very important information in those archived posts,

    • Prof G went in at the weekend and removed everything, no discussion…..Therefore the blog is now in tatters and suspect every thing is gone…maybe he will recycle some in his MS site. It will need a massive clean to get it into some working order, the search function is now a mess.

      • “A senseless act of vandalism”…… More like a selfish and/or self preservation act!

        Without any explanation from the man himself, all we can do is speculate and assume the worse of his intentions. Really makes me reconsider paying for his insights on the other site, if one day he will decide to pull it all down with no advice warning or explanation. Sad and confusing for sure. Huge loss for all pwms.

        • I suspect it was quicker than sorting through them in case maybe he used a picture or text that leaves a liability. It severes ties. I must admit the other site has always undermined the blog and you want clinical insight. I am not going to provide that and therefore things need to change. such as fewer posts by me.

          • Please not fewer posts by you. As much as the clinical posts are useful, I’m a scientist geek and even if they are a bit outside my expertise and I don’t always have time to properly understand them I love your constructive analysis..

  • I had a fool idea this morning because I don’t remember what is killed by alemtuzumab… what if lemtrada puts the disease in remission due to tolerance induction?
    PwMS have brain bits shred off from the disease, lemtrada clears the immune system that when recovers it may be tolerant towards brain bits in the body…

    • I don’t remember what is killed by alemtuzumab….virtually everything lymphocytic….I am sure the long term remission is due to some for of reset of immune tolerance

      • I was thinking it could be the same mechanism you used to induce tolerance towards interferon and remove neutralizing antibodies

      • Hi MD, if Alemtuzumab is killing everything lymphocytic, why wouldn’t it harm existing immune memory? Even if antibodies are still in the blood but they will wane given some time and the cells producing antibodies gone plus A lot of memory T-cells?

        • Good question…I think because in comparison to canser useage the dose is low if does not clear everything and perhaps explains why the B cells come back so quickly. It clear does kill some memory but it probably wont touch the long lived plasma cells making antibody as they express little CD52

          • Thank you MD, so larger dose of Alemtuzumab potentially could kill more memories? May I ask what’s the difference of memory B-cells and plasma cell? Memory B-cells can class change to plasma cells but their immune responce is the same making antibodies?

          • I suspect so with larger doses and more frequent dose I think there is less B cells. A naive cell can make a memory B cell (which can self renew or form into a plasma cell) or a plasmablast and plasma cell the plasama cell is long lived and secretes antobody. The memory B cell can present antigens to T clls I am not sure plasma cells do this, The plasma cells usually live in the bone marrow the memory B clls circulate. Once a mwmoery B cell has formed it has made its antibody. Memory B cells start out as unswitched where they have not class switched to IgGA, IgG and IgE, I think the IgE comes from cells that have class switched to IgG. They can also class switch but lose IgD and CD27 and these cells may have a different role.

  • WHY?! WHY DO THIS PROF G?!

    Some will think it’s silly of me, but discovering you have indeed removed all your posts from the Blog has made me cry!

    The life of MS is constantly about living with loss and being bereft and then there’s those things that provide support, reassurance and consistency. The Blog is a part of this for so many of us: mostly PwMS, but some clinicians also.

    The loss of your posts and replies to comments is highly significant.

    Since discovering the Blog I have kept a list of the posts that I may wish to return to – as a sort of security blanket. It now has dirty great holes in it and it seems to me, without knowledge of your reasoning, for those holes to be unnecessary.

    This is an action that rightly or wrongly I’m experiencing as heartless and not as evidence of the caring advocate I’d experienced you as thus far.

    • You want to make a clonal cell line so you do a limiting dilution. You take a set number of cells and you add them to a tissue culture plate. These often have 96 wells in them you may start with a dilution of 5 cells per well so every well would be positive but it should not be clonal you dilute this to 1 cell per well and colonies should occur in every well but this seldom occurs and then you may go 0.5 cells per well meaning one in every two wells would be positive. You put them under a microscope to see them coming from one colony

    • The example would be making a monoclonal antibody. You do a selection to show that you have cells that can grow and that they can make the anti antibody of interest you then do limiting dilution to make.it. monoclonal

  • Other than taking DMTs, HIIT exercise and Keto diet.

    Is there anything else that has been shown to lower neuro filament lightchain levels?

    • Not the Keto diet crap, it causes more harm and no real evidence of benefits. Just eat normal, balanced and less. KETO is VERY bad for you unless you really know how to do it and there might be no benefits.

      • What’s normal high carb?

        Your body is designed to be in mild ketosis, do you think we had balanced meals thousands of years ago? And lots of carbs?

        Fasting and mild ketosis was reality

        I’m pretty sure keto involving inflammatory fats and foods is bad yeah

        • It is often misunderstood that human is never really “evolved” for thousands of years but reality is even few generations apart we eat differently and we and our genes adapt. It doesn’t matter what your believe what kind of lifes our ancestors lived that’s all irrelevant now. Many cultures especially the long lived ones had thousands years development lived on agricultural/plant based food.

          Common sense now we know a normal and balanced diet is 50% vege 25% protein and 25% carbs, in a presentation suitable to ur own cultural background. Its good to live in modern ages hey! We live more than twice as long now. And ur point of good keto is exactly why I said you need to know what to do.

          Keto is bad generally speaking, messes metabolism, causes brain damage, and there is NO evidence it facilitates repair.

          Just eat normal and less.

          • So your going by your theory of short term evolution VS 100s of thousands of years

            how long until we can adapt to processed foods, refined sugar, refined cards, alcohol, high salt, cake chemical enhancers, preservatives, inflammatory oils and fats

            I agree with everything in balance but how can it be irrelevant how our ansestors ate? Haha.

            They also exercised a lot more. Does your diet not include fats then? Just veg, protein and carbs?? You do know the brains dry weight is mostly fat?

          • It is irrelevant because what you had in mind is an impression not the full story, plus people die in young ages so why do you want to live it that way..I’m not saying we will adapt to bad nutrition but pointing out you don’t want to live the way how human had to live. Hundreds of years ago we don’t even have DMT’s you wouldn’t say that’s the way it was meant to be?….

            By protein i mean meats, you get enough fat by consuming protein from normal sources. And changing some % meat based protein to plant-based is worthwhile too.

            No idea why you kept fixating on processed food, I don’t think I ever mentioned it. However if you ask me to choose between strict keto diet or balanced diet with processed food I’d rather have the processed food path.

            And I respect your choice of going keto, but I wouldn’t as I see no benefit whatsoever to outweight the downsides.

  • Anonymous-

    To be fair any diet that cuts out the obvious is better than the standard western diet. It’s whatever diet works for the individual.

    However that wasn’t my question. Whether you like the keto diet or not, it’s looking like it lowers neurofilliment light chain levels. Which higher levels are linked to worse MS progression over time.

    Which DMTs do and also HIIT.

    I’m not pushing a keto diet. I was wondering if anything else other than the 3 mentioned lowered neurofiliment light chain levels.

    • I agree, personally I doubt any diet will be disease modifying, but we should try live as healthy as possible. Also thank you for sharing – do you have the name of the article I can read please?

      • I am learning not.to post on such types of paper because if you don’t say its great.you upset people. There is a statistical effect and if the authors want to be believed they should repeat it. However the first thing to say is look at the axis of the graph starts at 6 and it looks different, start the graph at 0 and it looks minimal why the difference neuroprotective or could it cause stress that is anti inflammatory and so stops nerve damage. I think it is safe to say this reduction is minor compared to that.published with natalizumab.

        • Yes it would be nice to see larger and more study’s into the effects of diet.

          However there’s no money to be made so it would have to come mainly from charity’s etc

          I’m not saying stop taking DMTs obviously they have a proven significant effect on NFL levels.

          If keto diet can be proven again then surely it’s got to be an option for people to go down, however larger study’s should be conducted.

        • I know some doctors making up dietary recommendations so their patients will stop asking… It gives a false sense of security that one is in control, and it also gives a wrong idea that one is doing something good just by eating…. Telling people that diets don’t work is taking these away.

          My question would start with does lowering sNfL in this study acutally means less neuro damages, would it maintain with time, and is it safe to stay on AKD (and is it tasty :))

  • Are there any new IRTs in development? That maybe specific to MS? That target parts of the immune system that drive MS

    • New IRTs…..at Barts the HSCT service otherwise no, IRTS occurred duue to a part of history. Alemtuzumab and cladribine trials were stopped and potentially with alemtuzumab there was the anti-drug antibdoy issue…The next IRT tested should be Ocrelizumab….It is not a good pharma model…abit a of cash then nothing verses a drip feed.

  • Hello.
    Any thoughts on what to do if my neurologist is acting like I am already beyond help, and just placating me with vague answers whenever I ask how I am doing or my prognosis? By the way he also kept me on as a patient for free even though I was leaving to go to another neurologist because I can’t afford to see him any longer because I am on state funded medical insurance and living in a nursing facility now with progressive MS.

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