Ectrims conference last week

[chalknpens]

I'd been following, through Facebook, the worldwide conference in Europe, covered by folks who are connected with NMSS and MSWorld. It's all been very interesting, but very abstract.

Then I heard one doctor say that it is time for doctors to consider the side effects of the new medications and plan on spending more time monitoring their patients, and following up with their patients, after tests, etc.

I was so happy to hear a doctor advocate more patient care and concern. I have long felt that the DMD treatments we inject are a DIY (do it yourself) project ... and that some neurologists withdraw from their patients as 'people' once the diagnosis is given and the treatment begins ...

"Call the pharmaceutical nurses - they are the experts" is something I heard often from my former neuro. My current neuro has her own nurses, and they and she do answer my questions and address my concerns directly.

So here's to the prediction of more neuro/patient monitoring and contact. Cheers!

[0485c10]

Then I heard one doctor say that it is time for doctors to consider the side effects of the new medications and plan on spending more time monitoring their patients, and following up with their patients, after tests, etc.!

i think the word "new" was very important to this doc speech. the "old" ms meds don't require that degree of surveillance because death is a lower side affect with them.
i'm sorry i don't think he said what you hoped you heard.

i think if you switch to a newer med you will have greater monitoring & patient contact. I think the older meds are still DIY and will remain so.

[onlyairfare]

Well we do give the shots ourselves daily or several times a week, and we see the doctor what - 10 - 20 minutes every month or two or three or six? And more importantly, we live with our disease(s) 24/7/365, so who knows more about our disease than us? Each MS patient is different and all.

I have asthma too, and many of us have other chronic disease such as diabetes, seizures, heart disease, whatever. The doctors and their staffs have some specialized knowledge, and strong diagnostic, treatment, teaching and "coaching" roles. With their help and advice when I need it, I am OK with "DIY." I am the one with MS and asthma, not the doctor.

But I do think that with new or changing meds, new diagnoses, problems, they should indeed be there for me.

I remember reading a magazine story about a medical school that made all of its medical students be admitted to the hospital overnight to learn what it was like to be a patient. Most of them found it very illuminating! How else would they know what it feels like on our end of things?