Multiple Sclerosis Blog - Everyday Health

My inbox told me of an interesting video conversation that took place at the European Community for Treatment and Research in MS (ECTRIMS) conference in Amsterdam this past October. The video is accompanied by a helpful written transcript.

The conversation is hosted by MedPage Today which is a site for medical professionals (but they let this hack blogger behind the curtain now and again). I get e-mails from this group most days letting me know of something going on (not all that often is there a multiple sclerosis headline, but enough that I keep up my membership).

Today?s posting was of a conversation with Dr. Jack Burks, a practicing neurologist and Chief Medical Officer for the Multiple Sclerosis Association of America (MSAA). The discussion was on the one-step beyond disease modifying therapies that seem to garner most of the attention in the media and much of our time when we visit our MS specialists.

While much of the interview centers around symptoms of MS (which, I?ll admit, do affect the quality of our life with multiple sclerosis), I found that hearing the doc?s side of the equation was the most interesting part of the conversation. We only know our side of our appointments. To hear what the neurologists think about going into our meetings was refreshing.

?Doctor, I don?t want to go there. This is such a terrible problem for me. I don?t even want to discuss it with you.? This was what one primary progressive multiple sclerosis (PPMS) patient told Dr. Burks when he asked if she had any bladder issues.

This video talks about many of the symptoms of MS as they affect our quality of life. I guess I always think of symptom management as just that ? management of my MS symptoms. I?d not considered that they also have me dancing on the end of a string when it comes to the quality of my life.

Have a listen to the video (or read the transcript) and hear what our docs need to/want to hear from us when we?re in the exam room with them. Really listen to what we don?t talk about enough. Learn from this conversation with an MS professional about how we might get in our own way because we might not ask the questions or we simply assume that ?it?s not my MS? or ?they can?t do anything about that anyway??

I understand that I?ve been, in my own way, off and on for the past decade. I get out of the way only when I realize that I?ve over-done, under-prepared or committed the ultimate medical crime ? I?ve assumed!

I hope you find this interview as informative as I did.

Wishing you and your family the best of health.

Cheers

Trevis

Don?t forget that you can also follow me via my Life With MS Facebook page, on Twitter, and our new group on MSConnection.org. Check out our bi-monthly blog I?m doing for the Multiple Sclerosis Society of the United Kingdom, A Yank?s Life With MS, as well as our very special new monthly blog for the National MS Society.

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