What is important to you when it comes to education on living better with MS?

Hi - I am a woman living with an rare auto immune disease but I am also a health educator.  At HealthTalk, we supported a very active MS community for years... but I have lost touch over the past 5 years.  I would love to hear from the MS community on what issues are important to you.  How you like to receive information?  Who do you value most?  An interesting fact....

In a recent survey, information starved patients want more from docs according to a MedTera study conducted in September 2010.  Of the 7,028 survey respondents, 95% indicated they are looking for more information about disease management.  77% indicated they hadn’t received any written information about their illness or medications directly from their physicians.  Doctors aren’t doing enough to educate patients.  Now here’s your chance to drive the conversation.  


Let me know what your views are!  thanks so much Sharron

[supermum_ms]

Hi Sharon, welcome to our little corner of the web. You may like to read our health pages, top right of your screen, yellow icon. You'll find some very interesting articles written by members for members, facts and personal experiences are a key ingredient to understanding the weird and strange. Nothing equals getting information from the horses mouth so to speak, dr's are often informed but lack the understanding of what it feels like...

Q:How you like to receive information?
A:Straight up, and factual, dont skip the science. Spoken words are not always truth so i like to see it backed up with research and the hard data.

Q:Who do you value most?  
A:Not sure how to answer that one, overall i'd have to say family but i think you might be meaning in the medical field (neurologist, GP, MS nurse etc) and from my perspective through experience that would have to be my GP.

Q:An interesting fact....
A: It can take years to get dx and your neurologist will be 'comfortable' with waiting until your sx are worse or your MRI changes so they can be 100% sure. So my interesting fact is that the revised Mcdonald criteria has been newly revised again in 2011, it is suppose to make getting dx easier and more timely.

I'm not sure i'm giving you what your looking for, i'm from Oz and we have far fewer MSers (18-20,000) here, on the ground that translates to fewer neurologist that have MS experience. The second neuro I saw, should have been able to dx but from my experience of what he put me through and from the stupidly inacuarate things he said, he knew little about MS. Less than my GP who is 100% sure from my history, sx and lesions on MRI that that is in fact what i have.

Information isn't always correct, the source is important, the education and experience of any doctor is vital to your on going care but the neurologist is even more important if they are the only one's that can affectively dx and perscribe DMD's. I actually think the most important person with any disease is the person living with it, with out their drive to learn and understand, to forward on or participate in research, to fight to change tomorrow for the next person, is imho what makes the MS community what it is today and why it will be even better tomorrow!

Cheers........JJ

[Lulu54]

Hi Sharon and welcome.  Thanks for telling us up front of your connection with health Talk.  I follow the forum over there at everday health and really appreciate the work that Trevor does.  

My apologies in advance if this question offends you, but before we get too deep in this conversation with you, I should ask what you intend to do with what we give to you.  more than once we have had professionals from other organizations come on here, pick our brains, and then disappear.  It sometimes feel like being looted by pirates.

you have asked some great questions  and I'm sorry you are also living with a lifelong chronic disease.  It sure isn't fun.


best, Lulu