Time is brain; pledge your support. #BrainHealth #PoliticalSpeak #MSBlog #MSResearch #ECTRIMS2015
“Despite being in Barcelona 3 days today is day 1 of ECTRIMS 2015. After a year’s work we finally managed to launch our “Brain Health: time matters in multiple sclerosis“ policy document last night. We would have preferred an official ECTRIMS satellite symposium, which was, unfortunately, not to be. Despite this we had a very good turnout and there has been a lot of discussion around the document. What we now need is your support and help in disseminating the information. Please download the document, read it and if you agree with it pledge your support for the document. We are hoping the campaign goes viral and we get thousands of people signing up to the initiative. I truly believe that if our recommendations are adopted and implemented widely it will make a big difference to people living with MS and their families.”
“We need your help to make this campaign go viral. At present we are working on the concept of holding a competition to see who can come up with the greatest viral campaign. The latter could be a picture, poem, movie, short story, sculpture, drawing, animation, design piece, campaign, etc. What will it take for the MS community to take Brain Health seriously? The following short video is an example of a very effective app that was designed by a company called periscopic to show you the impact of gun crime in USA; to keep it short I have only captured a stats from a single year (2013). The app shows you how many citizens in the USA died prematurely as a result of gun crime and how many years of life were lost. I would love someone to make an app like this for MS to illustrate how many neurons/axons, or brains, or cognitive functions are lost in MSers waiting to be diagnosed, waiting to be treated, waiting for a monitoring MRI, or waiting for their therapy to be escalated to a more effective treatment when they are not responding to their current therapy. In essence we want to communicate the concept that ‘time is brain‘.”
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Dear neurologists, MS needs to be treated with DMT as soon as possible but also the patient needs to be informed of the relapse triggers that are known as soon as possible, so they can make positive lifestyle changes. When MS is first suspected the patient needs to be informed of this. Don't wait to say this until definite MS is diagnosed. This would of been very very helpful to me if this was done. If this had been done I would be writing a thank you letter to the hospital and doctor. Sadly this was not done in my case.
I agree -generally speaking, neurologists need to have a greater sense of urgency when a person is diagnosed with ms. Keep the condition under review, ensure that DMDs are discussed and that the person knows about triggers for relapses. I was diagnosed in '96, SPMS by 2010. None of the foregoing was done for me. 😞
Prof G, There are three main messages, but something very important is missing: 1) To aim to start treatment soon after diagnosis (and trying to minimise any delays to diagnosis). 2) To set a goal for treatment to not just stop relapses but also to minimise any changes that can be seen on brain scans. If either happens, then that might be time to change the treatment until the goal is reached. 3) To encourage people with MS to adopt what is described in the report as a "brain-healthy" lifestyle. That has to do with a healthy diet, taking exercise, not smoking and keeping any other health conditions, like heart disease or diabetes, well-controlled (or to try and avoid them in the first place).But this campaign is missing something very important and most MSers I sure will agree: It does not mention that the patient needs to be informed of the triggers for relapses as soon as possible. Infection, stress, anxiety and heat. It is not fair on patients to first find out about these relapse triggers by experiencing them. Patients may not begin reading about these triggers on the web until during or after a relapse or some time after their diagnosis. If the aim is stop relapses and minimise change then this needs to be added.
I am not sure about infection as trigger since I've had many and they didn't trigger anything. The same goes for hot baths/ heat which is an old myth – it's not a trigger but a temporary phenomenon called Utthoff.STRESS on the other hand has been the main trigger for my MS – without it I would not have had any MS symptoms.
The triggers can be different for each person. Yes it's important to look after oneself and be aware of individual causes of setbacks. Some of us can thrive on some types of stress.
As we all know, we're all different. I've had serious infections that have caused problems with my MS, stress no.
I knew of an MSer who went to a sauna and developed ON not that long after. May be heat can be a driver of the severity of a relapse too? We are all different, how long would it take for a doctor to discuss these triggers and drivers? Less than a minute. If I was a neurologist I would be discussing these with MSers as a priority.
Patient needs to be informed about importance vitamin D as soon as possible. Also to be informed about neuroprotectants http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4391783/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4342365/
I agree about the vit D. It should be routine that blood tests are taken when MS is first suspected. This will be useful for testing the level of vitamin D but there could also be other useful information found in these blood tests. I didn't have any blood tests taken for over 11 months after my first MS symptom and I had to request them. Low vitamin D was recorded and I was advised three months after that to take vit D though the consultant neuro did not specify how much to take so I took just 400iu for over a year. I didn't have access to an MS nurse as I was diagnosed with CIS at the time.
Thinking about getting the message out, so far all I have is MStreat I like the play on mistreat.
I feel like printing off the brain health time matters in MS graffix and giving a copy the GP's at my surgery. They all seem to assume that all MSers deteriorate at a very slow pace and time doesn't matter in starting DMT and informing MSers about relapse triggers. We as MSers need to help educate GP's and other health professionals to recognise MS symptoms.
please do, the message has to be disseminated