Q & A September. Don’t forget 922

Q

This month is September, whilst I thought of another Yorkshire Video, apparently today is National Chickenboy Day, although apparently known as the “Statue of Liberty of Los Angeles”, which can be found on Route 66.

If you have any questions this is the place for you

As you know September also hosts an infamous day. I suspect most us can remember where we were on 11th september 2001 (11/9/2001 in UK or 9/11/2001 in the USA) when much of New York and elsewhere were dialling 911 for the Emergency services.

Therefore, do not forget 922 (Yep 9/22/2022 in USA or 22/9/2022 in Europe) for the inaugurals of ProfK and ProfA.

Did I really know ProfK when he and I were young?

That’s me in the Brown Shirt. Is that ProfK in the Lederhosen? Maybe we will see some pictures at the Inaugural

THIS IS FOR THE VIRTUAL MEETING USING MICROSOFT TEAMS

JOIN ON YOUR COMPUTER OR MOBILE APP

Click here to join the meeting

Meeting ID: 331 941 166 938
Passcode: QkP5wZ

About the author

MouseDoctor

64 comments

  • last OCR 04/21 – 3x vax with 0 antibodies and then 07/22 4th vax with „weak“ but at least some antibodies. would you reccomend the omicron booster asap and or maybe switching to Cladribine? (8 OCR cycles with NEDA since then).

    • The standard view is that booster are recommended…I am not a doctor so ask your MS team for their advice, it depends on individual views is my experience based on dealing with our clinical team

    • Of course you have to check with an expert, and I don’t know if this helps, but here in the US the reputable news (ABC) is reporting to take the new booster (just released) any time 2 months after whatever shot you’ve had. Sounds like “so far. so good” for you, and good luck. I stopped OCR in the beginning of the whole mess, and since I’m 64, I’m just playing it by ear, which I wish I didn’t have to do.

  • i have been on a steroid taper for two weeks and decided today to stop (60mg a day last taken 24 hours ago) i now have symptoms flooding back (eye floaters, tingling, weakness, tinnitus and fatigue). can the sudden cessation of lower dosed steroids really cause this many issues in the way of rebound symptoms or should a specialist be looking at other diseases alongside ms ?

  • Diagnosed 30 years ago with RRMS, secondary progressive MS for the last 20 years approx.
    Although the progression is slow I am aware of slowing down, and struggling more and more with mobility, fatigue, memory, bladder etc.
    In the last 30 years, consultants have never offered me anything as my ms is non active according to mri’s but still progressing. so have never taken any DMD’S

    I read and heard that LDN (low dose naltrexone) has been helpful for people with MS. I realise it is not a recognise treatment but I feel I need to try and alleviate my symptoms or maybe slow the progression if possible?

    Would very much like to read your views.
    Many thanks

    • The consensus view is that hard evidence for the effectiveness of LDN in MS is lacking. Beware of anecdotal data promoting it (quite common but not verifiable) that you’ll find on the web.

      • Published material (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/) suggests that LDN may be helpful, but as it is now a generic medicine, no drug company is going to profit from it’s study, so it is not studied. The dose is typically 1/10th of that used in opiate dependence, consequently the risk of side effects is very low. As there is no effective current treatment for progressive disease it seems illogical that it isn’t employed by neurologists in n=1 trials.

    • Not symptom relief, but look into Alpha Lipoic Acid, currently under a phase 2-3 (I think) trial to reduce atrophy in progressive MS. Over-the-counter in US.

  • What’s the thinking on omicron boosters for cd20 depleted patients that never mounted an antibody response and thus got evusheld?

    Will it boost t cells at least or will the spike protein use up the evusheld mabs?

      • Presumably at least some of it is circulating, just locally living in tissue around injection site it would do very little.

        Now I guess the question would be if it releases from tissue very slowly,so essentially would replenish once spike protein disappears. In any case not super keen on side effects yet again

    • I got no antibodies from 3x Pfizer vaccine doses and then get CoVID while on Ocrelizumab. After 3 weeks in hospital I was advised by a consultant microbiologist and my neurologist to get a booster. The booster (Moderna) hospitalised me for 3 days. Now I’ve been advised to get another booster. They haven’t checked my antibodies again. The illness induced by the vaccine suggests an immune response. Numerically, CoVID infection is 7 times worse than vaccine, so I’m inclined to go ahead with a booster a month before my next infusion.

      • Hi Mark,
        What were your symptoms after Moderna which caused you to end up in the hospital for 3 days? Was it high temp or heart palpitations / tachycardia or something else? Glad you are better now!!

    • Good point we have seen a case where antibody limited the subsequent vaccine response but to answer your question the T cell response hopefully will be increased

    • Yes I appreciate that you are bored with COVID posts, but the blog is about disemminating our work and some people still like to hear about COVID, because for example there has probably been more understanding about how antibodies and antigen specific responses are generated because of COVID-19, compared to what we will learn about MBP.

      However thanks for the article….I generally leave posts on MRI alone, it is the realm of ProfK. Plus I upset too many people by saying how can you use your expensive machine to define a biology in living people where you can not see or know is going on in the indiviuduals you are looking at and doing nothing to support that view experimentally….so we get weak correlations that probably mean very little for the affected individual. Yes it means that MRI does not get the air time

      • I am not going to respond to comments about personal issues eg. question about steroids by Anon above….nor to give advice…I am not a doctor and not-insured….So please go to the new blog but frame your questions in a generic way as the blogs are not for personal advice.

        If you hope to get a response to a medical issue maybe post on tuesday when NDG responds to her posts or if and when a neuro posts

  • Sadly I’ve just been diagnosed with ankylosing spondylitis alongside MS, and I’m wondering if there is any guidance from the biology on how to approach treatment. I’m on natalizumab currently, and can’t take NSAIDs because of kidney damage. I believe that demyelination is a known side effect of many of the biologic therapies for AS. The rheumatologist and the neurologist will work together on this, fortunately -the benefit of public system treatment in Australia.

    • You are correct we did an article Can rheumatologists stop causing MS. This is a hyppothesis that the potential problem of the anti-TNFs used in rheumatology are not entering the brain, if true there may be some options but for MS their value would be unknown. There are some drugs that are used both in MS and arthritic conditions such as leflunomide/teriflunomide (leflunomide breaks down to teriflunomide) and CD20 depleters (rituximab/oreclizumab) but these agents many not be useful in AS as the approved biologics are anti-TNF and anti-IL17.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3845512/
      I’m not a doctor and dont tkae this as advice

    • In Portugal at the moment will have a look but one problem is you are not going to sample the whole brain compared to MRI so are you going to get lucky to find an active lesion but I will have a look when I down load the paper.

  • I’m going to London next year for tourism and I thought I’d drop by prof G’s private clinic for an appointment. I just wanted to know the procedures as I would like to get an appointment as a non-EU citizen on a tourist visa while bringing my medical reports and MRI’s on CDs.

  • Hi, I was on Amantadine for fatigue but it seemed to be losing it’s effectiveness. I’ve just been prescribed Modafinal to counter the sleepiness and “brain fog”. It works ok, sometimes too well, still trying to figure out what dose works for me, one day I was awake until 4am, alarm went off at 6am and I then did a full day at work without feeling sleepy!
    However since stopping the Amantadine my mobility has seriously degenerated by 90% over the past couple of weeks, I was wondering if I could take both, there are no contraindications that I could find listed for mixing them.
    The Modafinil works against brain fatigue, and the Amantadine against mobility fatigue, but my MS nurse says one or the other.
    Anyone have experience of taking both at the same time?

    • A nurse isn’t qualified to make decisions like this for you in the first place. I’m sorry you aren’t able to talk to a neurologist. A quick google search shows no known interactions between modafinil and amantadine so I have no idea why the nurse thinks you can’t take both. I would say do what you need to do to be functional and take your health into your own hands. It’s your life.

  • There will never be another lady, another monarch, another soul so dear to so many in every corner of the world as Queen Elizabeth II. My deepest sympathy to each person so affected, especially our British friends who have given so much to improve the lives of those with MS. May God comfort you in loss and strengthen you in your purpose.

  • MS unreleated question, how do you scholars feel about pay walls to research articles? What about few sites that pirate them?

    • Pays walls are not good….That used to be how the journals would made money for doing the publishing…but the idiots academics have got themselves into a publishing mess (a) It can be a free to publish system the journals charge the libraries for the paper journal. We hav moved into the digital age and many journals are not in print, but the digital ether. They don’t pay people in the scientific fleet street to type set the paper which would take about 6 months to appear. They use cheap labour for Asia to use comuters to do all the work, but as they get digital submissions, it is not tat hard to format. So the cost of publication has dropped however (a) Journals that we are encouraged to publish realised they could in charge page charges so there is a charge to publish and a charge to read. We review these journals for nothing. (c) To avoid the pay walls open access was created by so that the public could see what they are funding, so the papge fee would be a publishing charge and the paper was free for everyone. However this created a gravy train. You mass email people asking to submit papers, if the fools do, the journal get someone to review it for free and if they are desparate for the cash they accept any old rubbish without much review. There are seas of extra journals They then charge you 1500-5000 to have the open access fee. So if we publish 20 papers a year that is £100,000 that has to be found from somewhere and that doesn’t go on research. Charities want their papers to be open access but dont do publication charges…It has to come from somewhere. Times this by thousands of scientists and it is alot of money down the toilet. Five minutes of though could have forseen this.
      When I had a library and had printed journals I would graze the literature, but now you electronically search on a subject…it really doesn’t matter what journal it is in, so we don’t need specialised journals. However some journals give an aire of quality and so the content is trusted. Read a paper in an open access preditory journal that takes any old nonsense and you are more cautious. I liked the preprint to pubmed cutting out the middle man and if this was funded by central government it would save lots of cash that could be sent on research. However (d) The odzy scientists are going to have to pay to deposit a preprint, page to get the journal to review and publish the paper and then pay to get open access.
      The publishing houses are creating preprint sites they were open access…now the Elsevier preprint site requires a login-in…which will probably become a pay site.

      Anyway to go back to your question about paywalls and pirate sites. You have paywalss because you have copyright laws and so if the journal charges that is what you have to do.

      Sure you can hunt for a private site where articles may be published…but we have been here before. It was called Napster when it was easy to get any MP3 music for free….Many people use this…However along came Metalica and took them to court…end of Napster. Must acess has evolved and you have Spotify and Amazon music etc. Maybe in time something similat will occur…we deposit our papers with the university and these are open access so check out that route,

      • thanks for the detailed response. I gathered scholars wouldn’t be offended say if I read their paper from a pirate site..

        My partner is a research student so we have access to most journals but their university’s library is a pain to use so I prefered to use these sites.. Plus sometimes pirate sites actually gets some paper ahead of school library (most of the times it is the otherway around).

        • Our library is does not get all the journals we would like no know the score.

          I would like it that the whole publishing systme is torn down

        • Use a solid VPN that does not keep any logs. Journals are becoming very litigious, particularly in the US. Almost as bad as the porn copyright trolls.

  • I’m seem to be stable for the past 2 years while on OCR,

    I have never done a single MRI with gadolinium, should I?

    I mean I have my original MRIs, MRIs for rebase line and yearly MRI’s, all none contrast ones.

    Would an MRI with Gadolinium be meaningful at this point?

  • MD I’ve been reading about dessication cracks (drying out pattern) of blood drops, which can be a low cost way to diagnose disease.

    Could this assist with the diagnosis of MS and possibly give further insights into MS? Thanks

    • Absolutely facinating…I heard about plans to do in MS this about 3-4 years ago and I thought yes but is it safe enough….Depleting B cells for cancer to stop a life threatening is on thing but in MS, I was concerned that the construct had no safety signal to stop the car-Ts after they have done their job as no B cells forever would have consequences but to see the results its amazing I have to digest it and cant read it on lap topasfigures too small. I need to work out if the returning B cells are selected for CD19 negativity and what I have to eat some cake, especially after this post

      I will do post

By MouseDoctor

Translate

Categories

Recent Posts

Recent Comments

Archives