CategoryLifestyle and self-management

Improving MS outcomes: The smoke in our eyes!

Many of you will have registered themselves on the UK MS registry. This is an online registry that aims to monitor the motor, mood and treatment status of pwMS based on what we call patient-reported outcomes or PRO’s. This means that pwMS voluntarily fill out simplified MS questionnaires every 6 months after being prompted by MS email spam of the most honourable kind. Based on the responses of...

DMT tool vs. The Flawed Milky Way

Urbanisation is by and large a good thing, and I wouldn’t want to miss the buzzing environment of people, culture and, last but not least, cuisine for a second. However, it comes with an annoying side effect: more dangerous city streets. Last week, I had to experience this the hard way. Decennia of intelligent road design couldn’t protect me from being hit by a car while going out for a run. How...

Smoking Never too Late to Quit

Rodgers J, Friede T, Vonberg FW, Constantinescu CS, Coles A, Chataway J, Duddy M, Emsley H, Ford H, Fisniku L, Galea I, Harrower T, Hobart J, Huseyin H, Kipps CM, Marta M, McDonnell GV, McLean B, Pearson OR, Rog D, Schmierer K, Sharrack B, Straukiene A, Wilson HC, Ford DV, Middleton RM, Nicholas R; MS Register group. The impact of smoking cessation on multiple sclerosis disease progression. Brain...

MS-Selfie

Educating/Empowering MS patients Every five minutes someone, somewhere in the world, is diagnosed with multiple sclerosis – joining the 2.8 million people already living with it. What they soon discover is MS is a fiendishly complex disease. No two people have the same disease course or symptoms – nor do they respond to drug treatments in a similar way. They also find – in the...

Bowel Dysfunction in MS is Common

As the is more damage in the spinal cord then the innervation between the gut and central nervous sytem becomes damaged to and this may result in bowel dysfunction Prevalence and predictors of bowel dysfunction in a large multiple sclerosis outpatient population: an Italian multicenter study.Alvino B, Arianna F, Assunta B, Antonio C, Emanuele D, Giorgia M, Leonardo S, Daniele S...

Buyer Beware!

A few years ago I came up with the term of mushroom food to reflect SH1 from Bulls to say that what was written was probably not correct. This morning someone posted a web site which states: “COMPLETELY OVERCOMING AND GETTING RID OF MS IS POSSIBLE NOW“ They aim to sell you mushroom extract and other things….a mix of loads of differnt herbs including maca root. Is this some weird...

To all MS earthlings: the DMT tool is ready for take-off!

Elon Musk has not been able to reach Mars yet but we have been able to officially launch the ‘DMT tool’ on the clinicspeak website! On April 29th, we invited all readers of The MS blog to share their opinions about our ‘DMT tool’. This online web tool was designed to help pwMS select a disease-modifying treatment that matches with their lifestyle and is fit for the literal and figurative long run...

WHAT REALLY AFFECTS QUALITY OF LIFE IN MS?

Results from the Trajectories of Outcome in Neurological Conditions (TONiC) study in MS have just been published – “Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy”. If you want to read and keep a copy of the paper, until 1 July 2021 you can read or download it for free from this, link without any need to register or pay (thank you to Journal of...

Want a full or half dose?….Does it matter? Stop eating too much.

Yesterday, we had the online challenge from ProfG about whether MD is only interested in targeting relapse and not the real MS. I was asking about the interval between dosing with ocrelizumab and questioning how much more information we need to know that simply dosing at 6 months was more than is needed for many people. This is based on the idea that cells within the memory B cell pool are...

Bladder care is self-care!

Over the past year, I became surprised how many pwMS consider their overactive or neurogenic bladder symptoms as ‘normal’, ‘part of the disease’ or ‘something you have to learn to live with’. I spent many hours explaining pwMS that this is not the case, that these symptoms are, at least partially, treatable, and that treating these symptoms is often more impactful on pwMS’s quality of life in the...

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