Monday, 28 April 2014

Questions to Ask Your Neurologist-MS life

Part of this is a repost from ProfG and follows on from meet and greet at MS Life 2014.


One thing that is clear we need to support all aspects of 
Education, Education, and Education 

MS Society has, is and needs to be as proactive in this as possible, otherwise the Postcode lottery will remain.

The "Meet the Scientist" session at MS life 2014 was a positive and busy time and provides a good way of giving people of access to science.


ProfWoodRoofe from Sheffield and ProfPaul from Amsterdam talk on a one to one with MSers (Yes we got their permission). The Meet the Scientist is not just a Barts thing 

We as scientists need to do more! There are MS Society branches that have never had a visit from any Scientist or Neurologist.  To academics out there maybe time to give more back for the support you get or have had from people rattling tins and organise more "public engagement" activities. 


To you at MS Society branches or Chapters, You can be the catalyst, why not find out who are your local researchers and them invite them to come and give a talk...We are all big mouths and love an opportunity to spout.

I did one using a portable 5cm Beamer to project slides. But you don't need slides to be able to talk and answer questions. The more you know about your disease and the treatments the better able you will be to make the best choice for yourself.

Education! Education! Education!
This will help beat the postcode lottery in your area.
An MS specialists is likely to more informed and up to date than a generalised Neurologist...Who are you speaking to
It was proposed by ProfG that one way to drive a change in practice is for MSers to ask their neurologist the right questions!

"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)."




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


BASED ON CONVERSATIONS A GOOD PRACTICAL SESSION OR CLINICAL SPEAK FOR MANY PEOPLE WOULD BE

HOW TO GET A SECOND OPINION....IT IS YOUR RIGHT!

Many MSers at MS life had no trust in their professional carers, "Often the sit back and wait brigade that are so laid back they do nothing"..whilst time is Brain

They may well be taking the standard path but an MRI every nine years is not that good based from our neck of the woods, Maybe "name and shame" (but please don't do it here as I get in enough trouble as it is:-)) is the way to get certain regions to up their game
However, you can be as proactive as possible to avoid this and it doesn't have to mean moving.

If you are not convinced of the actions of your GP or Neurologists you need to seek a second opinion.

If you are in the boonies the chances of an MS specialist being in your locale is more limited but there are big cities all around where MS neuros lurk.
Technology could allow the Neuros to come to your local hospital, will this be away to get rid of the postcode lottery?. A computer camera and a few screens don't cost that much. I have seen it done and work.

9 comments:

  1. Really enjoyed meeting the MSers again at MS Life. As mentioned above, what is the most striking thing is the variability in the service received from neurologists, many who are not MS specialists, with far too many examples of extreme conservatism regarding treatments and a definite postcode lottery in the UK.
    The UK's neurologists outside the metropolitan centres need to urgently up their game.

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  2. As an MS patient, what exactly do I need to do in order to get a second opinion?

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    Replies
    1. http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68

      This is the NHS site

      Delete
    2. Maybe ProfG can do a generic post on this

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  3. Victoria said

    I spoke briefly to Prof Giovannoni on Saturday who basically advised that I should be on some DMT.What a knowledgeable man so glad I came MS live :-)

    I had an attack in December in both feet and an attack in March where I took myself to hospital because I lost feeling in left arm,side and face. After 2 MRI scans on my head and spine they confirmed MS and I had 3 steroid drips to ease the inflammation. Nothing else has happened so after speaking to the Professor I have called my hospital [EDITED] and apparently I am on a waiting list to see DR X [EDITED] and this won't be till end of July!!!! Is this acceptable. I don't know what I should do. Please advise many thanks.

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    Replies
    1. Hello. It's sounds like you have had the exact same symptoms as me. I had numbness in both feet one day in Jan when I woke up and within 4 days it had spread up my body so it was only my upper torso and head that was not effected they gave me steroids and after a while it disappeared then in Oct it started in my left hand and worked up my arm, neck across top of back my chest and into my cheek on left side then I was diagnoised. My appointment is anyway now I think they leave it a while so the relapse can go as much as possible before they can start to look at a solution for you, if your concerned ring your MS nurse if you have one. Hope all goes well for you :)

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  4. I have had rrms for 13 years. I have had one mri prior to beginning my beta-interferon treatment (10yrs ago) I was moved last year onto avonex.
    No mri. I've been begging for one for years as I had a terribly nasty relapse a few years ago, the aftermath of which is still here.
    What can I do? Can you send me in the direction of guidance I can use to argue my case please. I cannot find it on here.
    Many thanks

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  5. I was diagnosed with MS over a year ago. I had a single episode, but I've been meeting the McDonald criteria as my MRI showed numerous lesions, with two of them active, and my LP was positive for OB. In autumn I was told by my neuro that I would not be eligible for DMT until I have a secon relapse, yet ABN guidelines say that ''patients with only a single major relapse in
    the preceding two years, but combined with MRI evidence of continuing disease activity (i.e meet the revised McDonald criteria for MS)'' my be advised to be on DMDs. Does it mean that in fact I am eligible, but was wrongly told that I am not?
    Any advise would be greatly appreciated.
    Many thanks

    ReplyDelete

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