Sunday, 1 July 2018

Stornoway research day series: Diagnosing MS

Prof G outlines how a neurologist will go about diagnosing MS. He explains the difficulties in diagnosing it before symptoms appear, and the difficulties neurologists have dealing with "Dr Google". 







The talk also outlines conditions that mimic MS, false positive diagnoses, and the Will Rogers Effect.

Watch Prof G's talk on our Youtube channel. Subscribe to our channel to keep up to date with talks and videos.



This is one of the talks from the healthcare professionals day. The audience consisted of district nurses, physios, health visitors, GPs and many others that look after people on the island. Most had a general role, and didn't specialise in MS, so these talks were to inform them about taking care of their MS patients.

The talk is part of a trip by the Barts-MS and Glasgow teams up to Stornoway, on the Isle of Lewis, in April 2018. In a change from the traditional research days held in London, Barts-MS teamed up with the Glasgow neurology team to present two days of talks: a day of talks to healthcare professionals on the island; and a day of talks to patients and their families. There are no neurologists on the islands and patients have to fly to Glasgow. Yet rates of MS are some of the highest in the world. The teams wanted to help healthcare professionals to more effectively care for their patients with MS, and to empower the patients and their families so they can self-monitor and better control their care and treatment. Read about our trip to Stornoway.

6 comments:

  1. This really is a dynamite post Gavin. As perhaps usual now, I strongly - Dr Google up my sleeve - get what you say on many fronts.

    I am afraid though that what ruined the talk for me was you clearing your throat so often.

    Please reassure me that this is not a false positive!

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  2. Thank you posting this. The video is very educational, imo.
    My personal situation is that for 12 years I have had symptoms and lab findings that have 'created' a state of confusion for many GP's and Neurologists that I have employed over that time period.
    My disability stated with loosing feeling in my toes and then progressed to other sensory issues such as L'Hermittes, visual changes including becoming cross eyed, temp sensation hot and cold issues, major fatigue, brain fog, cognitive issues etc. therefore assumed MS.
    I asked for gluten testing about 2 years ago and have recently found that I have Coeliac disease.
    During this process of searching for understanding and ways to improve the decline the 'Profession' has wanted to label me as mentally ill instead and put the symptoms down to being psycho-somatic even though there are clinical results such as lumbar punch finding O bands and MRI finding lesions which were not present at the outset but appeared after a couple of years and eye tests VEP findings showing nerve conduction delays etc.
    So what I have found is that being labelled as 'Mild RRMS' back in 2008 does not match the literature and in my humble opinion there may have been a mis-diagnosis. Although there are many things indicating MS there is not a reason to label as 'Mild RRMS' because there has never been a relapse or remission and the MRI findings remained stable since 2008, a one event change or one MRI timing found the lesions BUT the symptoms have continually progressed and the disability increased. Because the lab finding of MRI hasn't changed the Neurologists are lost and in reality don't want to search for what is happening nor why am I becoming more disabled without MRI indication! The statement 'you have MS what did you expect' has been used by many.
    So I wonder if the mis-diagnosis of PwMS is more common than the literature shows and because many people achieve remission from diet and Lifestyle changes therefore may not have had the 'correct' assessments done during the process of ruling out mimics?
    Many people, but not all, maybe 40-50% achieve improvements by using the Jelinek and Wahls protocols which might also be an indication of mis-diagnosis rather than MS disease improvements/remission?
    Is there need for comparative studies of the Jelinek and Wahls protocol and the validity of the individuals MS diagnosis?
    Do these positive results show something about the diagnosis rather than about the diet/Lifestyle change that is overlooked?

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  3. The whole "Stornaway Series" has been so, so interesting and informative. Thank you all for the lectures and the work that you have put in.
    Is it possible to get references for the papers on anticholinergic load that Prof G spoke about in connection with brain health? I need to convince my neuro to move me off an anticholinergic.

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    1. Hi there, so glad to hear you've found the series useful. I've asked Prof G for the references so will post them here when I get them :)

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    2. Here's the blog post ProfG wrote about it: http://multiple-sclerosis-research.blogspot.com/2015/04/clinicspeak-anticholinergics-increase.html Hoping to get some updated information soon via email or on the blog.

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  4. Would be interesting to do autopsies on those cases of very benign MS that appears to burn out after 25-30 years without causing severe mental or physical disability and determine if they actually had MS. That said, I'm not sure even an autopsy can conclusively determine that.

    The case of the woman who had migraine who was prescribed natalizumab and died of PML is incredibly sad. But I would suspect the number of MS cases that were untreated or undertreated and labelled as 'migraine' or some other thing would be more.

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