#AttackMS – a flipped pyramid

Why does Selma Blair’s speech sound slurred?

Whenever a celebrity gets MS and comes out of the ‘closet’ MS trends on social media. When Selma Blair attended the Oscar ceremony on Sunday night walking with a cane it caused quite a stir. You can now watch an interview with her on ABC News. You will notice that she has a slurred speech, which we call dysarthria and she is unsteady on her feet and needs the cane for balance. Her walking problem is called ataxia. It is clear from these signs that she has probably had a brainstem and/or cerebellar attack. This would be due to a so-called posterior fossa lesion, which is considered a poor prognostic sign.

In an interview in Vanity Fair, she talks about starting a monthly infusion therapy, which by inference must be natalizumab. As you are aware natalizumab is one of our most effective maintenance therapies and importantly is in the top league when it comes to disability improvement, i.e. no evident disease activity and disease improvement (NEDADI). As she appears to be quite early on in the course of her disease she has a good chance of some, or most, of her disabilities improving. However, against making a full recovery is the severity of her attack and the fact that she is now 46 an age when recovery mechanisms are known to be below par.

It is really a good sign that she is on a high-efficacy DMT (flipped pyramid) and has not being treated on a low efficacy therapy with the aim of escalating her therapy if and when necessary. Don’t forget time is brain so flipping the pyramid makes sense.

I am interested in knowing if natalizumab is being used as part of DrK’s #AttackMS paradigm (aka #BrainAttack), i.e. to get on top of the inflammation ASAP with natalizumab and to transition onto to another DMT later on if necessary, for example, if she was JCV-positive. I would also be very interested to know if an IRT (alemtuzumab or HSCT) was discussed as a potential treatment option with her?

Whatever you say it takes a brave person to come out and speak in public when you have such a potentially disabling disease and it when MS remains such a stigmatizing disease.

CoI: multiple

22 thoughts on “#AttackMS – a flipped pyramid”

  1. I often read on this blog that MS is a stigmatizing disease. I don’t really understand what you mean by that. Do you mean there is a sense of shame in having MS? Why? It is not a disease brought on by, for example, drinking too much alcohol, taking drugs or being promiscuous.

    1. Grytten & Måseide. ‘When I am together with them I feel more ill.’ The stigma of multiple sclerosis experienced in social relationships. Chronic Illn. 2006 Sep;2(3):195-208.

      OBJECTIVES: We explored the stigma that people with multiple sclerosis (MS) experienced in social relationships. Informed by the symbolic integrationist paradigm, this sociological study focuses on the creation of personal identity through interaction with others. The symbolic interactionist account of stigma examines the meaning and reality being negotiated in communication with others.

      METHODS: Fourteen people with MS and their relatives were interviewed. The unstructured interviews were tape-recorded, transcribed and coded in accordance with the procedure of grounded theory.

      RESULTS: Informants reported being ignored or, in contrast, having people overemphasize MS in interpersonal encounters. Although people tried to act tactfully, these acts were experienced as crucial stigmatizing. Informants were coping to counteract stigmatizing experiences in social relationships.

      DISCUSSION: People with MS perceive that their bodily performance and impression management is being judged in interpersonal encounters. Being ignored or perceiving that MS is overemphasized indicates the dilemma of managing stigma in social networks. Consequently, during interaction and in social relationships, people with MS experience a sense of ‘feeling more ill’. This paper describes strategies of networking to affirm self and identity.

      1. Okay…
        I suppose that I (with slow/stable PPMS) must in part be very fortunate with regard to my loved ones and the people I associate with. Because the contents of the paper you quote is, in all honesty, totally alien to me.

  2. Oh good lord. I had the exact same experience as she did with doctors and there is only one word for it: despicable. “You’re a mother, you have Kids so it’s just exhaustion, rest up” I was told at four different gp appointments over a few months when I really hit rock bottom. This was after years of struggling. I was struggling so badly and my children were also suffering because of this. I now know I had relapses while my kids were young. It was so difficult not sleeping at night because they were young then going to work for a day all the while wondering what was wrong with my health. Often I’d assume it was normal and everyone must feel like this. I hate to think back to those times because I wasn’t properly there/able for my kids. Once diagnosed, it all clicked in to place. I wish I had been listened to much earlier on in my struggle. Even when finally referred to a neurologist he told me that he also felt tingling and numbness on occasion and it was nothing to be concerned about. I felt like I was losing it. He then agreed to an mri to appease me and the rest is history. It makes me so sad. I needed help and was totally alone.
    I was diagnosed with CIS which was ridiculous and told to wait to see would ms develop. A year later it did. Once I started on tecfidera I noticed a huge improvement in my mood and coping abilities. It has been a great help.

    1. Natalizumab is extremely well tolerated and was initially developed as a relapse treatment, the effect kicks in within days. The idea of the #AttackMS concept is to put a lid on the acute inflammation asap. This buys you time to check JCV status and other factors & patient preferences before deciding the next steps, which may include staying on Natalizumab, or moving to a different DMT.

    2. Natalizumab is extremely well tolerated and was initially developed as a relapse treatment, the effect kicks in within days. The idea of the #AttackMS concept is to put a lid on the acute inflammation asap. This buys you time to check JCV status and other factors & patient preferences before deciding the next steps, which may include staying on Natalizumab, or moving to a different DMT.

      1. “If I had MS my main worry be smouldering MS”
        This is especially hard to assess early enough to take proper action. Measuring BVL is, even by your words, a biased measure for using on an individual patient. It is influenced even by something as simple as hydration or even inflammation that started again after a while and could thus make brain swell and make BVL smaller, when in fact you were worse off in the long run.
        NfLs and OCBs are probably better prognostic factor? As in getting rid of OCBs and taking NfLs down to normal levels.
        This is why we need to know what happens with OCBs and NfLs for those on all high efficacy DMTs (HSCT included). And this first step is much more easily done than a (still needed) head2head trial.

      2. What is the evidence to show the relative effect of Alemtuzumab, HSTC, Cladribine and Natalizumab on end organ damage? And is the evidence based on a ‘level playing field’? I.e. Does it compare pwMS who are similar in terms of disease status/length/severity etc at the start of treatment with each?

      3. You are right, it is not a level playing field. The data is what it is and it is up to you to make of it what you want. The HSCT data is likely to be biased the opposite way; i.e. more advanced and the most active patients get to have HSCT, which really argues for HSCT being the most effective of all the treatments.

        Can I suggest you read the following posts and draw your own conclusions?

        Beyond NEDA
        Smouldering MS

        If I had MS my main worry be smouldering MS, which is something we have to sort out. The problem with not recognising smouldering MS early on is that by the time you do it may be too late; i.e. MS will have already shredded your brain, albeit a slow shred, and reduced your chances of being a healthy ager. Saying this, not everyone has the option of being treated with HSCT, so most pwMS who want the top of the pyramid will have no option but to choose something several rungs down.

        I am interested to know which rung are you going to choose?

      4. “I am interested to know which rung are you going to choose?”
        The question for me is whether Natalizumab is sufficient or whether it is necessary to move to Alemtuzumab for higher efficacy? I read the studies you flagged up, thank you, but it doesn’t seem to me that there is evidence to show that one is definitely more effective than the other. The drugs are not compared against the same things, there isn’t evidence to show (that I could see) Natalizumab doesn’t effect tissue repair (just that Alemtuzumab does) and so forth. On the other hand, a lot of people, when/if they change from Natalizumab (through choice or necessity) now seem to be opting for Ocrelizumab but the evidence for its efficacy seems to be limited, and it isn’t clear it is hitting the right target (or so it seems). Leaves me , at least, bit confused which among the higher ‘rungs’ is best to choose.

  3. I personally think Selma Blair is an inspiration , a brave woman. It takes a lot to put yourself in front of the whole world in the middle of a relapse with a cane. It took me ages to carry a cane, now i am shocked about those feelings when so much has changed since.

    To me there are two options when you are diagnosed with ms, either you accepted it and s… the world ( the sooner it is accepted the better you will feel about it) or you go down to a place you don’t want to be.

    It is good to make people aware of this disease.

  4. ‘This would be due to a so-called posterior fossa lesion, which is considered a poor prognostic sign’

    ProfG, I’ve seen you describe signs of poor prognosis before. What are these based on and do they need revising in the current era of higher efficacy treatments?

  5. On a separate note, and in relation to the reported case of Type 1 diabetes after alem:
    is the incidence (and severity) of secondary autoimmunity less after HSCT?


    1. ” is the incidence (and severity) of secondary autoimmunity less after HSCT?”

      Yes, the incidence of s.a. after HSCT is much less than after Alem. It has to do with the partial depletion of the immune system. Secondary autoimmunity is not seen in cancer patients who are treated with Alem.

    2. About a third to half that with alemtuzumab. Follow-up is not long or vigorous. Also complicated by the fact that alemtuzumab was used as part of the ablative protocols in the past.

  6. Great view!
    I totally agree, “all should it ms hard”!!
    I have ms since 2000, and if high efficacy DMT (Nataizumab, alemtuzumab, and others) were available back then, maybe, or for sure, I wouldn’t have permanent damage…

  7. Her doctor told her that within a year she will have regained 90% of her abilities back.
    It’s so ironic to see doctors playing the illusionists with RRMS. They should charge a ticket for the limps who can walk again.
    But when PMS hits the door then, oh well, you can’t have it all (yes I know Ty slows the shredder, but it doesn’t stop it!).
    Hope she feels better soon 🙂

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