What to ask a consultant about Primary Progressive Multiple Sclerosis
July 8, 2016 1:49 PM Subscribe
A family member has been diagnosed with Primary Progressive Multiple Sclerosis. He has an appointment to see a second consultant for confirmation of the diagnosis, and wants to use this as an opportunity to find out as much helpful information as possible. We understand that there is currently no effective treatment for Primary Progressive MS. What should he ask the consultant in order to get the most out of this appointment? We are in the UK. Many thanks.
Best answer: I was diagnosed with relapsing/remitting MS fourteen years ago, and I credit my neurologist's aggressive use of disease-modifying medications for how well I'm still doing. I've done what I can on my end--staying active, eating well, getting enough exercise, continuing to work/have hobbies/etc.--but there's nothing to replace evidence-based medicine.
Because of that, my first order of business would be to express active and committed interest in taking part in a clinical trial for any medication in development for PPMS (if your family member is in fact interested in doing such a thing). Even if there's no trial currently enrolling patients, if your doctor knows your family member is interested s/he can keep them in mind if something comes up.
I'd also want the doctor to tell me about the full range of her/his experience with the variation in disease progression among her/his patients. MS is a baffling, unpredictable disease that affects everyone differently, and the common perception that everyone who has it will eventually end up very disabled is simply untrue. As a new patient, I was fed all sorts of horror stories about what was going to happen to me (and then told not to get stressed out because stress makes it all worse!). Not one of those stories has reflected my lived experience.
I don't know anything about how medicine is practiced in the UK, so this may not be a thing that happens there, but if it's possible to be seen by a doctor who specializes in MS, it's always a good idea to get care from them instead of a generalist. A specialist will be more up to date on the most recent research and information.
posted by jesourie at 2:28 PM on July 8, 2016 [2 favorites]
Because of that, my first order of business would be to express active and committed interest in taking part in a clinical trial for any medication in development for PPMS (if your family member is in fact interested in doing such a thing). Even if there's no trial currently enrolling patients, if your doctor knows your family member is interested s/he can keep them in mind if something comes up.
I'd also want the doctor to tell me about the full range of her/his experience with the variation in disease progression among her/his patients. MS is a baffling, unpredictable disease that affects everyone differently, and the common perception that everyone who has it will eventually end up very disabled is simply untrue. As a new patient, I was fed all sorts of horror stories about what was going to happen to me (and then told not to get stressed out because stress makes it all worse!). Not one of those stories has reflected my lived experience.
I don't know anything about how medicine is practiced in the UK, so this may not be a thing that happens there, but if it's possible to be seen by a doctor who specializes in MS, it's always a good idea to get care from them instead of a generalist. A specialist will be more up to date on the most recent research and information.
posted by jesourie at 2:28 PM on July 8, 2016 [2 favorites]
Best answer: I just came across this Scientific American article about a new drug that seems effective in treating PPMS. It's not on the market yet in the US, but sometimes these things move faster in the UK.
posted by jesourie at 5:20 PM on July 8, 2016
posted by jesourie at 5:20 PM on July 8, 2016
Response by poster: Thank you very much for all these answers. I have passed them on to my family member.
posted by paduasoy at 11:32 AM on July 21, 2016
posted by paduasoy at 11:32 AM on July 21, 2016
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something i realised a short time after my diagnosis was that i wasn't really looking for a cure, but a plan. that - a plan - was what my doctor gave me, and it was a huge help. you want to know what happens next. you want to feel that there's a route that you follow. a known pathway with appropriate support. i assume this would still apply to ppms. so that's what i would suggest focussing on: "what next?" just putting one foot in front of the other, having a target, an appointment, a framework, is a big help in the first few days.
you may also want to start thinking about the longer term, to some extent (but it's ok to not do so immediately if you're terrified - i certainly didn't). what support services are there? and even if there's no specific "fix", you can still look after yourself more. eating better. hitting the gym (a good physio is a blessing). reducing stress. losing weight. meditating. these are all things i have done. just being the best you can be, despite the ms, helps.
there are support groups. tbh this isn't my cup of tea (although i have a relative with ms who is a great help and i guess is maybe a substitute), but you may want to ask about those. something else my doctor focussed on was guidance on how to navigate the internet - which places are reliable sources of ms related information (and which not).
good luck. the first few weeks are fucking awful. but apparently everyone gets used to things, one way or another.
[i've written this as if talking to your relative. it just felt easier that way.]
posted by andrewcooke at 2:22 PM on July 8, 2016 [4 favorites]