2a) I recently enjoyed the opportunity to discuss patient concerns, expectations, and needs with one of my original #MS patients, Kate Milliken @MCPFounderKate, and I am happy to share some of the take-home lessons from BOTH of us here. @MSassociation @mssociety pic.twitter.com/Ulk6tlib6n
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
3) We think this is such an important topic to address patient empowerment and reliable, transparent communication between patient and provider! @mssociety @mscare @MSViewsandNews @MyMSTeam @MS_Focus @the_MSBlog @themsguide @MustStopMS
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
5) I work at the Icahn School of Medicine at Mount Sinai in NYC as a neurologist at the Corinne Dickinson Center of Multiple Sclerosis. Kate is an incredible #MS patient advocate who has done work around the world advocating for patient care & improved outcomes in MS.
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
6b) (CONT)
III. Discuss it in a few mos at their next appointment
IV. Schedule a visit or a call to occur shortly after the MRI so you can explain the scan is stable, celebrate the good news of “no new lesions”, & reinforce the positive impact of the treatment plan
Please vote— MultipleSclerosis_CME (@ms_cme) February 15, 2022
8) … concern with a new diagnosis is the fear of the unknown, about what is going to happen to you either in the short term or for the rest of your life. With that impetus, we then focused a bit on how a clinician can help someone . . .
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
10) Perhaps the first thing for a clinician to remember is that diagnosing #MS might be what s/he does every day, but this is a forever day & a terrible day for the patient w/newly diagnosed #MS, who just joined a club . . .
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
12) Clinicians would be well-advised to acknowledge this is a lonely, overwhelming moment for that person & how s/he might be guided. Kate recalled having the feeling it was beyond her control, even tho intellectually she knew that to some extent her illness could be managed.
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
14) An instructive example: when she experienced a new symptom, upon consulting her doctor she was reassured by advice such as “A true MS relapse usually lasts > 24 hours. So if a new symptom happens, set a ⏲️for yourself for 2days & watch it. If it goes away before 2days…
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
16) …to give a little structure to what must seem very unstructured & very uncertain. Having a plan is empowering in general. Navigating ambiguity is a real challenge for pwMS, especially early on.
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
18) Poor communication can make things worse. Kate recalled once being in a neuro office and seeing a pwMS struggling to walk a 25ft walk test. At the end the #neurologist hit the timer but the pwMS asked, “Do you mind if I do that again? I know I can do better.”
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
20) That is the type of small triumph that a clinician could welcome, even if it doesn’t change medical decisions. @SKriegerMD agrees: "I think we could talk a lot about the time pressures in practice and in visits, but when I do the 25-foot walk test in my practice, I tell …
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
22) Celebrating those types of triumphs is important. Another one that is if someone’s MRI scan is stable, often a clinician might leave a quick 10 second voicemail or a quick MyChart message – A one liner like ‘no new lesions’ and that’s it.
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
24) @ms_thriving @AaronBosterMD @RanyAburashed @GavinGiovannoni
"I think it is worth genuinely celebrating it. To be perfectly honest, I learned that by watching Kate," from the self-documentary she made back in her early diagnosis days, when she really thought about what . . .— MultipleSclerosis_CME (@ms_cme) February 15, 2022
26) … because I want to highlight it. Kate agrees: "When pMS are able to understand what MS is, then there is a fundamental path that s/he can understand, which is if an MRI does not get worse, it means that there’s no new damage.”
— MultipleSclerosis_CME (@ms_cme) February 15, 2022
28) Welcome back to a very special & unique discussion between patient & provider in optimal care & communication of #multiplesclerosis. I am @SKriegerMD, joined by Kate Milliken @MCPFounderKate, a #pwMS. If you missed yesterday's tweets, please scroll up. There's CE/#CME here!
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
30) Most MS lesions don't cause symptoms, but they are important to understanding a pwMS’s disease. @SKriegerMD: “it’s important that I approach the conversation not thinking that I know the whole story from the MRI scan, & to really listen to what that patient’s experience is."
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
32) @SKriegerMD has also explored this concept as an MS educational tool using the #TMOMS (https://t.co/v017AUtMsr). Read about it, and earn more free CE/#CME credit, at https://t.co/P9G25k2Kdm
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
34) … the news isn’t going the way that s/he wants. Kate says that the pwMS she knows are resilient, really appreciate honest knowledge, & can sometimes accept hard truths, reflect on them, and then use them as a springboard for bettering their life and the way they live it.
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
36) @SKriegerMD describes envisioning progression as a loss of #reserve, an accelerated aging process. We all lose reserve as we age but people with MS can lose that reserve faster.
🔓https://t.co/pFNjc9XVpX— MultipleSclerosis_CME (@ms_cme) February 16, 2022
38) Yes, hard truth can be empowering, but for the MS clinician it does take some nuance in really thinking about how people understand words like “progression” & what it is going to mean for them.
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
40) @SKriegerMD responds that clinicians do have ways that we say & describe difficult things, but also “to be a great communicator, you also need to be able to pivot, and listen, and figure out where that person is and use a different strategy or make a new one on the spot …
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
42) Kate added that it also important for doctors to listen to people who believe they are taking control of their MS with different holistic modalities. It's too easy to dismiss patients' enthusiasm! "If I come as a patient to you and say Dr. Krieger, my #MS symptoms are …
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
44) A clinician should find a way to delicately frame, 'Well, Kate, I have not had any research on carrots. I'm not sure that is true, but if you do believe that it's working for you, I don't see any harm in that; keep doing what you are doing.'"
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
46) Diet studies – to use the 🥕 example – are very difficult to do…https://t.co/I266zUbBp8https://t.co/U4OhyaMS0h
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
48) If a pwMS attributes their success to a healthy lifestyle change, I am going to support it. Kate helpfully adds that pwMS have the ability to go online & find experiential evidence everywhere.@MSViewsandNews@shiftmshttps://t.co/zdC2b7kZmdhttps://t.co/hwmSRApoOr
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
50) getting neuro exams & wonderful care, but they are having their physicality looked at, their diet, their sleep. There is waiting list 100 people long! It would be great for neurologists to be open to believing that their patients may find their own independent actions …
— MultipleSclerosis_CME (@ms_cme) February 16, 2022
52) In conclusion: Clinicians must learn how to have conversations about hard truths, how to be present & how to help support patients
in the things that make them feel truly empowered…— MultipleSclerosis_CME (@ms_cme) February 16, 2022
54) Now, for your free CE/#CME! Go to https://t.co/KtL9FOEmux & claim your credit! I’m @SKriegerMD. Follow @MS_CME for more tweetorials. #neurotwitter @RanyAburashed @drbarrysinger @RayDorsey7 @academiccme @MSViewsandNews @shiftms https://t.co/zdC2b7kZmdhttps://t.co/hwmSRApoOr
— MultipleSclerosis_CME (@ms_cme) February 16, 2022