Photograph: (left to right) myself, Klaus Schmierer, Gareth Pryce, Gavin Giovannoni, David Baker, Stewart Webb, Sarah-Jane Martin, (below) Isle of Lewis.
I've been asked to put in writing the second of my Stornoway (on the Isle of Lewis) talks. The title is 'the neurologists tool kit' and provides an overview of your visit to your neurologist in plain speak. In many ways what is written below are my thoughts on the topic, and is by no means the sum of all practical wisdom!!!
Look back at your first clinical encounter, I would say a vast majority of you would have left without a clear understanding of what just happened - am I right? That's because often the objectives from the two sides are not always the same.
In the UK, on average a person with MS waits 3-4 months to see an MS neurologist. Through necessity the main source of information becomes Dr Google; I'm not saying this is wrong, but simply a fact. Everything beyond this is simply a succession of moments in time, layered in legitimate facts and misinformation. Conversely, your MSologist at your first visit is viewing you in the following terms: is the diagnosis correct, do I need to do more investigations, what is the prognosis, are they eligible for treatment or suitable for clinical trials, how do I manage expectations - and the list goes on.
If this sounds unfamiliar, familiarizing yourself with the two sides will go a long way to improving your experience.
My goal with those that I see is to educate, educate, educate...and ultimately empower each person to be able to direct their own care. It is often an exacerbating experience to start off with, but one that is more fulfilling in the future.
So what is in an MS neurologists tool kit?
1) Clinical skills
This by far is the most important thing we have in our tool kit as clinicians. Our training is often protracted, and full of additional courses and degrees to allow us to accurately diagnose and manage neurological conditions. To the more senior of us the diagnostic process is almost pattern recognition and begins when you walk into the consulting room.
A person's history is very important in the diagnostic process and informs us of the chronology of events, whether it's progressive, and the rate of progression. While the clinical examination informs us of the pathways involved, which allows us to determine where the problem is. Any investigations that follow are based on the information garnered from the two.
This is why a computer may never replace what we do to good effect; the best diagnostician is our own brain.
Figure: Myotomes; muscle innervation by nerve roots. One aspect of what is involved in a neurological exam.
2) Investigations: MRI & lumbar puncture
An MRI head and spine study provides the descriptive information about the area of brain or spinal cord involved. The underlying causes of these lesions can be more than one, but the pattern of distribution may make one more likely rather than another, i.e. inflammatory lesions vs. stroke/small vessel disease. Sequential MRIs may also allow us to prognosticate; wherein the accrual of new lesions is indicative of active disease or treatment failure. Neurologists may also comment on brain volume loss at the outset, and will almost certainly direct you to the more highly active therapies.
A lumbar puncture, on the other hand, provides the biological reason behind the disease. The presence of oligoclonal bands/antibody production in your spinal fluid is almost diagnostic of MS. Not surprisingly, the presence of bands in your spinal fluid also increases your risk of continued disease activity and clinical progression. Recently, we introduced the testing of neurofilament proteins that reflect the degree of breakdown of neurons in your brain and spinal cord. If you have high levels of neurofilaments in your spinal fluid, then you have more of a chance of disease progression and accruing disability faster than a person with normal levels. If you'd like this tested by your doctor, here is the link: http://multiple-sclerosis-research.blogspot.com/2018/02/barts-health-csf-neurofilament-light.html
Photograph: We received this years Innovation Award 2018 for the introduction of neurofilament testing at Barts Health (left to right: Francesca Ammoscato, myself and David Holden; not in the picture Lucia Bianchi)
3) Clinical trials: EDSS, 9-HPT
Always inquire about clinical trials. Clinical trials allow you to access newer treatments 6 to 10y before they are available for clinical use. Moreover, participation in the trials may mean that after trial completion you have access to the treatment in question on a compassionate basis, whilst the drug is in the process acquiring license for prescribing.
The visits can be sometimes long-winded and often involve assessments of disability (EDSS, timed 24 foot walk and 9-hole peg test for the upper limb function), imaging and in some cases a lumbar puncture.
Trials are also an important educational resource about MS and provide an insight into current MS research.
Figure: The EDSS score
4) Future: self-monitoring
Online applications and wearables empower us to track our own health. It is almost impossible to clearly remember your last relapse or how your overall health fared this year compared to the last. The hope is that as we use the data from these devices, the consultations become more tangible and more targeted (i.e. personalized), so that the hospital visit is more informative.
If you haven't already done so, check out the Apps available for the iphone/android devices: Microsoft health vault, Sym Trac, MSAA (My MS Manager), and disability calculator (provided by Rebif manufacturers).
Hope you have found this post useful, and good luck!
Labels: #SelfMonitoring, 9-hole peg test, Clinical Trials, EDSS, Lumbar Puncture, neurofilament, Neurologist, oligoclonal bands