Sunday, 4 October 2015

Questions to Ask. Blast from the past

CLINICSPEAK-These are some questions ProfG posed

The following is a list of questions you may want to ask your neurologist when a decision is being made about starting a disease-modifying therapy (DMT) for treating multiple sclerosis (MS).

What is multiple sclerosis?
Are you sure that you have MS?
What type of MS do you have?
What prognostic group do you fall into?
What is the risk of you not being treated with a DMT?
Do you have active MS?
Am I eligible for treatment with a DMT?
Do you understand the difference between the treatment strategies of maintenance-and-escalation and induction therapy?
Do you understand the concept of treat-2-target of no evident disease activity (NEDA)?

ClinicSpeak: questions your neurologist should ask you 13 Aug 2015

Therefore I would encourage all of you to ask your neurologist to ask you these questions:

1. What do you understand your prognosis to be?
2. What are your concerns about what lies ahead?
3. What tradeoffs are you willing to make?
4. How do you want to spend your time if your health (disabilities) worsen?
5. Who do you want to make decisions for you if you can't make them yourself?

5 comments:

  1. Re "Are you sure you have MS?"
    I'm curious to know what blood tests the Barts MS team order as part of the diagnosis process for patients where MS is considered one of the possible diagnoses.
    What would you be trying to rule in/rule out with these tests?

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    Replies
    1. There are some basics we would virtually always do, and then there's a significant number of tests that depends on the individual. There is no one size fits all as the differential diagnosis in somebody who develops chronic myelopathy in his 50s is different from the 17 year old girl with optic neuritis. For an overview: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2850590/pdf/10.1177_1352458508096878.pdf

      Delete
  2. Jeez... Not this proposal of questions again - which implies a complete lack of theory of mind, empathy and understanding. I can't actually imagine ProfG is so dense, so I will just assume he is very busy and hence a bit disengaged.

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  3. I find this really upsetting. I've seen the young people leaving the neurologist consulting room in tears after diagnosis. The truth is no one knows the prognosis of a patient with MS. Two siblings can have the disease and both will have a different prognosis. You only know what the statistics tell you. Do patients with cancer get told what do you want to do if your cancer comes back? I think not.

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    Replies
    1. Absolutely. I agree with you 100%.

      I won't repeat the comments I made the last time these questions came round, but I will add that they come across to me - as someone who lives and copes with PPMS - as having been constructed by a cold, clinical mind with no _direct_ experience of _living_ with an unpredictable disease.

      Barts - you can do better.

      Delete

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