Case study
I am 22 years old, and I think I may have multiple sclerosis (MS). I had an episode when my right arm was clumsy and numb. It recovered spontaneously. I am due to see a neurologist next week. What should I expect?
Prof G’s Opinion
I don’t know what you should expect because the practice of neurology and medicine is quite variable and differs worldwide. I could only say what you would expect if you saw me.
Yes, you may have MS, but MS is a clinical diagnosis and a diagnosis of exclusion. Therefore I would take a detailed medical and neurological history and then examine you to see if they have neurological signs. Finding signs of involvement in a particular neurological pathway is important for fulfilling the criteria for dissemination in space. MS has to involve at least two neuronal pathways. In addition, you will need a full work-up that will likely include an MRI of the brain and spinal cord, evoked potentials, a lumbar puncture and blood tests. I have to be confident that no alternative diagnosis could explain your presentation. In addition, I would need to show dissemination in time, i.e. involvement of two or more structures separated in time by at least four weeks. The diagnosis of MS is not trivial and should not be rushed. If I doubted the diagnosis, it would be better to wait. The old maxim ‘time is often the best diagnostician’ is as pertinent today as it was in the past. Despite this, the misdiagnosis rate remains stubbornly high. I recommend you read some of my older newsletters that go into the diagnosis of MS in more detail.
The following is my growing list of questions I have put together to help people with recently diagnosed MS to make an informed decision about starting treatment. This newsletter covers what to expect during the diagnostic consultation. For this patient, there are no easy answers.
What to expect during the diagnostic consultation?
What is the risk of not being treated with a disease-modifying therapy (DMT)?
What are the attributes of the specific DMTs or treatment strategies?
S1P modulators
Alemtuzumab
Cladribine
Teriflunomide
Fumarates
Anti-CD20
AHSCT
How can I derisk or reduce my chances of getting certain adverse events on specific DMTs?
Will I be able to become a parent? What about pregnancy and breastfeeding?
What to expect during the diagnostic consultation?
You should not expect too much from the initial consultation. The second consultation after all the diagnostic tests are back will be difficult. Before COVID-19, an MS diagnostic workup in the NHS would take about 6-8 weeks. Due to COVID-19-related delays in getting MRI scans and evoked potentials, it currently takes up to 4 months. This wait is unacceptable, but it is the reality of an overstretched and poorly resourced NHS. In an ideal world, the diagnostic work-up should only take days. Occasionally, patients with possible MS are admitted to the hospital because of a disabling attack. This then allows us to make a more rapid diagnosis.
Diagnosing MS or any other chronic and potentially disabling disease is distressing. In my experience, the response from patients is highly variable. Some patients come prepared for the worse and are relieved about finally getting a diagnosis. Some are surprised and in shock. Some get angry and criticise or blame the messenger for the bad news. Others question your judgement and refuse to accept the diagnosis; they accuse you of being wrong and seek a second, third or fourth opinion. Many are devastated and expect the worse; how long before I need a wheelchair? Rarely, a few patients are uniformed, have little or no idea about MS and ask about the disease.
Saying this, in the modern era, most patients I diagnose as having MS are aware of the disease and suspect they have MS before I tell them so. I say this because Dr Google, Dr ChatGPT and Dr Bing are only keystrokes away, and their answers are very credible.
Most patient’s who come for an MS diagnostic consultation are very anxious. Most newly diagnosed patients only take one thing away from the consultation: they have MS. Almost everything else said in the consultation is forgotten. I encourage patients to record the consultation or bring a partner, friend or family member who can be their backup memory.
I try not to overload patients with information during the consultation. Instead, I provide them with links to online resources to learn more about having MS, and we arrange a follow-up session with the MS nurse specialist in the next 10-14 days so they can ask questions. Please note the diagnosis of MS is often a slow process.
I always try and be upbeat and tell patients that MS is now a treatable disease. If we manage their MS actively, we can prevent or at least delay the development of disability for many decades. I also tell them about the emotional reaction they will likely have in response to being diagnosed with MS.
The psychological impact of being diagnosed with MS should never be underestimated, nor should the impact of the uncertainty associated with having a potentially disabling disease be ignored. I always tell them about Helen Kübler-Ross’s five stages of grief, best known by the acronym DABDA (Denial, Anger, Bargaining, Depression and Acceptance) and explain why we have added an extra A to DABDAA. The second A is for anxiety about the future. People diagnosed with MS may go through these stages in order of the pneumonic, and some will jump around and go through some stages many times. Some patients who get to the Acceptance stage may, when they start developing a disability, go back to Anger and Bargaining stages. Why me? Why am I getting worse? What can be done about it? Are you sure I have MS? Do you mind if I get another opinion?
For the cynics reading this, I am aware that the Kübler-Ross stages of grief have been criticised in the psychological literature, but they do provide a valuable framework to discuss with patients their emotional journey.
I always tell patients that being diagnosed with MS is a marathon, not a sprint, and it will take time to come to terms with it. HCPs must be there for the journey and ensure newly diagnosed patients have access to their HCPs and high-quality information about MS. The newly diagnosed patient needs to know you are their partner on a long journey.
Contrary to what you may expect, I counsel patients to stay away from Dr Google, Dr ChatGPT and Dr Bing until they have come to terms with having MS. I tell them that a lot of the MS-related content that is available on the web is misinformation and disinformation and that until they understand the disease it is difficult to know what is valid and helpful information and what is quackery. Many patients ignore this advice and overwhelm themselves with information. Information overload can make anxiety worse.
I don’t introduce recently diagnosed patients to MS-Selfie straight away. I think the level of information MS-Selfie provides is written at too high a level for the average person who is newly diagnosed. If patients want more information, I direct them to the MS Trust, the MS Society and our ‘MS Brain Health: time matters’ sites.
Depending on the patient and how they react to the diagnosis, we may refer them for counselling, cognitive behavioural therapy (CBT) and/or mindfulness therapy to help them come to terms with MS and to manage anxiety. Most patients are receptive to these psychological therapies.
Contrary to expectations, I avoid too much detail about treating MS and the specific DMTs in the diagnostic consultation. These are best discussed at the next visit. However, with some patients, the discussion gets to treatments very quickly. So it is horses for courses - the diagnostic consultation has to be tailored to the individual patient's needs.
I am also acutely aware that many pwMS are traumatised by their diagnostic consultation, with many people being left with symptoms of post-traumatic stress disorder about their experiences. This should not happen in the modern era. This is why I have tissues at hand; many patients who are told they have MS start crying. On many occasions, I feel compelled to hold the patient's hand. I think it is important for HCPs to have empathy, and holding hands is an empathetic gesture.
On rare occasions, particularly for patients who are alone and socially isolated, we may buddy them up with one of our other patients to ask questions and learn about MS. We choose these MS buddies very carefully; they need to be optimistic and also be able to communicate well and not overwhelm the recently diagnosed patient with information. I am aware that the charity Shift.ms that I work very closely with do a similar thing.
Another thing I do in the diagnostic consultation is to show patients their MRI scans. Seeing your brain and spinal cord and your MS lesions help you realise what the disease looks like, i.e. it is objective.
It is critical to allow recently diagnosed patients to have time to ask questions and even to allow some silence. MS is a serious disease, and how you inform someone about the diagnosis must be done carefully. Even though I have been practising neurology for over 30 years, I still find it challenging to tell my patients they have MS. MS, and the patient being diagnosed with MS, needs to be respected.
Now that we have recognised medical gaslighting as a significant problem in MS, please don’t allow the neurologist to gaslight you. There are things you can do to prevent this.
Keep detailed notes and records; patient-held notes transform consultations and force you to become a partner in your healthcare.
Record the consultation. Many HCPs don’t like this but say you must listen to the conversation again to ensure you don’t forget things or miss out on important information. You will be surprised how this changes the HCP’s behaviour.
Ask questions. Then ask some more. And don’t be fobbed off; if you are unsatisfied with the answer, ask the question again.
Take a person with you to the consultation for support. Having a witness has a similar effect to recording the consultation or documenting it with notes.
Focus on your most pressing issues, i.e. prioritise your time with your HCP. The consultation needs to be a two-way discussion. If your HCP is pressed for time, say you understand, but you would like to prioritise the following issues today. By doing this, you frame the limits of the consultation. Also, don’t expect the HCP to have all the answers at their fingertips, but do expect them to come back later with the answer.
Try and pin down the next steps for your problem, i.e. investigations, treatment, etc. Ask where the action point is, i.e. if the MRI shows this, how will that change my management? How soon will I get to switch treatments? …
If you’re still being ignored, what are your options?
Get a second opinion and ask to switch to a new HCP
Look to support groups or forums. Many of the MS charities have helplines you can use to discuss these issues.
Appeal to a higher authority, the person above your HCP, i.e. their line manager. In the NHS, we have a straightforward procedure for patients to complain or question their care. It is called PALS (The Patient Advice and Liaison Service).
Abuse, manipulation, gaslighting, and delaying a diagnosis are potentially reportable events which HCPs need to know about. This is why, rather than suffer in silence, make your healthcare system aware of the problem.
I would be interested in your experiences of being diagnosed with MS. What was done well and poorly, and would you change things?
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription to subscribe. For active paying subscribers, thank you; your contribution is much appreciated. Because of the falloff in paying subscribers, I am considering returning to a paywall that will give paying subscribers six months of unlimited access to all newsletters. At the same time, free subscribers will have to wait to access the newsletters later as an email but on the substack site.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your own healthcare professional, who will be able to help you.
Diagnosing MS: what to expect?