A first diagnosis of multiple sclerosis often raises many questions and fears. Which symptoms may point to MS? Which tests are needed? And what happens after the diagnosis?
This article is an adapted English translation of an interview originally conducted in German in February 2021 with Dr Datzmann, Senior Consultant at the MS Centre of Bezirksklinikum Mainkofen.
Most of the interview remains highly relevant today. The main changes concern the diagnostic criteria: MS can often be confirmed earlier than in the past, so a clinically isolated syndrome (CIS) is now less often used as a long-term preliminary diagnosis.
This is especially important because uncertainty and fear can be very distressing at the beginning. Clear information, careful diagnostics, and compassionate support can make a real difference.
You are currently viewing a placeholder content from Default. To access the actual content, click the button below. Please note that doing so will share data with third-party providers.
More InformationTable of Contents
About Dr Datzmann
Dr Datzmann is Senior Consultant at the MS Centre of Bezirksklinikum Mainkofen. His work focuses on the diagnosis and treatment of multiple sclerosis. It is especially important to him that people understand the condition and know that MS can now often be treated very effectively.
What motivated you to become a doctor and neurologist?
Dr Datzmann: I probably owe my interest in medicine to my father. He worked as an emergency medical technician and always told very interesting stories. Medicine fascinated me from an early age because of that.
Neurology particularly interested me during medical school. I wanted to work in an area of medicine that relied less on manual skills, as surgery does, and more on thinking.
Neurologists are often the great thinkers when it comes to diagnoses and differential diagnoses. They have to use their knowledge and reasoning to work out which condition is causing a person’s symptoms.
Multiple sclerosis became one of my main areas of interest because it can now be treated very well. That means we can genuinely help patients. Unfortunately, this is still not possible to the same extent with many other neurological conditions, especially degenerative diseases.
Which symptoms commonly lead people to seek medical help for possible MS?
Dr Datzmann: It varies greatly. In principle, any symptom originating in the central nervous system is possible. The central nervous system consists of the brain and spinal cord.
One of the most common first symptoms is optic neuritis, which is inflammation of the optic nerve. People may notice a reduction or loss of vision that develops over several hours or days.
They often describe blurred or foggy vision, sometimes as though they are looking through frosted glass. Pain in or behind the eye is also common, especially when moving the eye. This is typical of optic neuritis, which is frequently the first noticeable symptom of multiple sclerosis.
Sensory disturbances are another common reason for seeking medical care. These may include:
- numbness or a furry sensation,
- pins and needles,
- tingling in the hands, feet, or face,
- a band-like sensation,
- a feeling of tightness or constriction.
This tight or band-like feeling may affect the legs or the trunk.
Walking problems can also occur. A person may walk unsteadily, with their feet placed far apart, or with signs of ataxia. Ataxia means that coordination of movement is impaired. Some patients say that they feel uncomfortable going outside because other people might think they are drunk.
Bladder problems can also be an early symptom. A person may suddenly experience very strong urgency and may not reach the toilet in time.
Other possible symptoms include double vision, swallowing difficulties, and speech problems. The list could be continued for a long time. In principle, any symptom caused by the central nervous system may also be a first symptom of MS.
How do you investigate what is causing the symptoms?
Dr Datzmann: Tests are important, of course, but the first and most important step is the medical history, or anamnesis.
The patient describes as precisely as possible which symptoms occurred, how they developed, and how long they have been present. At the same time, the doctor asks targeted questions.
This is followed by a physical and neurological examination. We assess whether the symptoms can be traced back to the central nervous system.
For example, in someone with double vision, weakness on one side of the body, or an ataxic gait, we need to ask whether the problem originates in the brain or spinal cord. Alternatively, it may come from the peripheral nervous system, meaning the nerves outside the brain and spinal cord.
Multiple sclerosis affects the central nervous system. The symptoms and neurological findings therefore need to fit with that.
I often tell patients that diagnosing MS is like putting together a puzzle. There are several pieces. The more of those pieces that fit together, the more likely a diagnosis of MS becomes.
Which pieces make up the diagnostic puzzle?
Dr Datzmann: The first important piece is the medical history.
The second is the physical and neurological examination.
Magnetic resonance imaging, or MRI, is also very important. We examine the brain and often the spinal cord. We look for areas of inflammation that have a location and appearance typical of MS.
However, MRI changes can also be seen in other conditions. Some lesions may look similar to MS lesions or appear in comparable areas. An MRI finding alone does not automatically confirm a diagnosis of multiple sclerosis.
Some changes are non-specific and may occur in several different conditions. They are therefore only one more piece of the diagnostic puzzle.
Another important element is cerebrospinal fluid testing. Cerebrospinal fluid, often shortened to CSF, is the fluid that surrounds the brain and spinal cord.
In people with MS, the CSF often shows mild signs of inflammation. This may include a slight increase in certain white blood cells.
We also look for what are known as oligoclonal bands. These are specific immune proteins. It is particularly relevant when these bands are found in the cerebrospinal fluid but not in the same pattern in the blood. This finding can support the diagnosis.
Which other conditions need to be ruled out?
Dr Datzmann: Ruling out other conditions is a very important part of the diagnostic process. Some diseases can cause similar findings in the medical history, neurological examination, MRI, or cerebrospinal fluid.
These include connective tissue autoimmune diseases, sometimes referred to as collagen vascular diseases. Examples include:
- systemic lupus erythematosus,
- scleroderma,
- Sjögren’s syndrome.
Specific blood tests and antibody tests can provide evidence for these conditions or help rule them out.
Neurosarcoidosis can also cause similar neurological symptoms. It is an inflammatory condition that can affect the nervous system. In sarcoidosis, enlarged lymph nodes are often found in the lungs or central chest area. These additional findings can help distinguish it from multiple sclerosis.
Another important differential diagnosis is neuroborreliosis, which is an infection of the nervous system caused by Borrelia bacteria following a tick bite. It can cause MRI and cerebrospinal fluid changes that sometimes resemble those seen in MS.
The more pieces support MS, and the more effectively other causes can be ruled out, the more likely the diagnosis becomes.
Can multiple sclerosis be diagnosed with certainty after the first relapse?
Dr Datzmann: It is not always possible to make a completely definite diagnosis after the first relapse.
A relapse is a clinical episode that the patient actually notices. This needs to be distinguished from changes seen on MRI. New inflammatory activity on MRI does not necessarily cause symptoms.
Inflammation may therefore occur in the brain or spinal cord without the person immediately being aware of it.
In theory, complete certainty could be obtained from a brain tissue sample. However, a brain biopsy is not a routine procedure for diagnosing multiple sclerosis.
A tissue sample may occasionally be needed if a large inflammatory lesion in the brain looks like a tumour. In that situation, doctors need to determine whether the lesion is caused by a tumour or by inflammatory activity related to MS.
How long does it usually take to reach a clear diagnosis?
Dr Datzmann: That depends partly on whether and when further disease activity occurs.
In the past, the diagnosis was often only made after a second clinical relapse. Today, however, we know that further inflammatory activity may take place in the central nervous system between two noticeable relapses.
Changes on MRI are much more common than clinical relapses. The patient may not notice anything at the time, but this activity can still matter in the medium and long term.
For that reason, doctors no longer always wait for a second noticeable relapse. After a first neurological event, regular follow-up MRI scans are carried out.
Once a new inflammatory lesion appears on a later MRI and the diagnostic criteria are fulfilled, the diagnosis can be made and disease-modifying treatment can be started.
In neurology, we often say: “Time is brain.” This means that we should protect neurological reserves as early as possible.
Update on diagnosis: The 2024 McDonald criteria allow MS to be diagnosed earlier in many suitable cases by including additional MRI findings and biomarkers. This means that some people who would previously have remained diagnosed with a clinically isolated syndrome for longer may now receive a confirmed MS diagnosis sooner. You can learn more in my dedicated podcast episode and blog article on the 2024 McDonald criteria (no. 139).
How do you communicate a diagnosis of multiple sclerosis?
Dr Datzmann: This is not a conversation that should happen casually during a ward round, with several other people in the room and another patient listening from the next bed.
We take time and hold the conversation in a quiet setting. If the patient wishes, family members or other trusted people can be present.
I first explain in detail what multiple sclerosis actually is. Surprisingly, many people know very little about MS when they receive the diagnosis. This can sometimes make the conversation easier because they are not yet influenced by particular fears or misconceptions.
In simple terms, MS can be described as an autoimmune disease. The immune system mistakenly attacks the body’s own structures in the central nervous system and causes inflammation.
It is equally important for people to know that few neurological conditions have seen such major advances in treatment over recent years.
Multiple sclerosis can now often be treated very effectively. Many people with MS can continue to live largely normal lives. They can work, exercise, and take part in their usual hobbies.
Which fear do you encounter most often after the diagnosis?
Dr Datzmann: Many people associate multiple sclerosis with one word above all others: wheelchair.
Some people have never heard much about the condition. Others know the name but understand very little about its actual course or today’s treatment options.
I sometimes use a small exercise. I write down one word that many people associate with MS and ask the patient to do the same. Very often, both pieces of paper say “wheelchair”.
It is then important to put this fear into perspective. A disease course in which someone becomes permanently dependent on a wheelchair is possible in multiple sclerosis, but it is by no means inevitable.
The vast majority of patients are still able to walk independently later in adulthood. People therefore need to hear this clearly: MS does not automatically mean a wheelchair.
What advice and support do you provide after the diagnosis?
Dr Datzmann: Once the diagnosis has been made, and if the patient agrees, we discuss the different treatment options.
We explain which medicines may be suitable, how they are taken or administered, and which potential benefits and disadvantages they may have.
The key point is that the person is willing to start an appropriate treatment and use it consistently. The treatment should fit the individual situation, disease course, and personal preferences.
At the time of this conversation, first treatment often involved what were known as first-line or platform therapies. These treatments are intended to reduce inflammatory activity in MS. Some are given by injection and others are taken as tablets.
The choice of treatment should always be discussed individually with a neurologist who specialises in multiple sclerosis.
Note: Today, the treatment approach has shifted away from automatically starting with lower-efficacy therapies and escalating only after renewed disease activity. Concepts such as “hit hard and early” or “flipping the pyramid” aim to control MS effectively from the outset—especially when the disease is highly active—because inflammatory activity is often greatest early on. The goal is to use this window of opportunity to protect brain and spinal cord tissue before irreversible damage accumulates. Treatment must still be tailored to the individual balance of disease activity, benefits, risks and personal preferences. To learn more, see Sequencing and Escalation in MS Treatment with Prof. Tomas Kalincik, Immunotherapy for MS with Prof. Tjalf Ziemssen and Brain Health: Time Matters in MS.
What happens next after the first diagnosis?
Dr Datzmann: After hospital treatment, patients usually return to their community neurologist.
We also offer follow-up care in our MS outpatient clinic. In our system, patients need a referral from their community neurologist to attend the clinic.
This creates a shared-care approach. Patients receive care close to home from their local neurologist and can also attend the MS centre when needed.
This cooperation generally works very well. We naturally refer patients back to the neurologist who is providing their regular care.
The aim is not to take patients away from another doctor. The aim is to provide good care together.
Which follow-up tests are carried out?
Dr Datzmann: We generally carry out annual MRI scans.
Depending on the treatment, regular blood tests are also needed. These checks help monitor the safety and tolerability of the medication.
In our clinic, we also carry out cognitive tests. These may include tests such as DemTect or the Montreal Cognitive Assessment, known as MoCA. They assess areas such as attention, memory, and processing speed.
The extent to which these tests are offered in a community neurology practice varies.
Why is cooperation between a community neurologist and an MS centre useful?
Dr Datzmann: In my view, the combination of local neurological care and a specialised MS centre works very well.
When a new therapy becomes available, or when particularly complex treatment questions arise, an MS centre is often the most suitable place to seek advice.
Patients may be referred to us by their community neurologist to clarify whether a particular medicine is appropriate for their disease course.
An MS centre has extensive experience with specialised treatment decisions and complex cases. At the same time, the community neurologist remains an important and easily accessible local point of contact.
I have found cooperation in this area to be very good.
Conclusion: A Careful Diagnosis Creates the Basis for Early Treatment
A first diagnosis of multiple sclerosis is based on several pieces of evidence. These include a detailed medical history, a neurological examination, MRI scans of the brain and sometimes the spinal cord, cerebrospinal fluid testing, and the exclusion of other conditions.
The final diagnosis may not always be clear after the first neurological event. Regular follow-up checks can help identify further disease activity at an early stage.
A calm and understandable conversation is just as important as the medical tests themselves. The diagnosis can initially feel frightening, but it does not automatically mean that an active and independent life is no longer possible.
Today, a range of effective MS treatments is available. Together with specialised neurological care, they can help reduce inflammatory activity, protect neurological function, and maintain quality of life over the long term.
About the MS Centre
At the time of the interview, the Mainkofen MS Centre primarily served patients from Lower Bavaria and neighbouring regions. For current information about appointments, referrals, and contact details, please visit the clinic’s official website.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
And at many more places.
* This text contains affiliate links. This means that I get a small compensation if you buy the product recommended by me through the link. For you nothing changes in the price of the product. And it helps me to pay for the blog and to write new posts.
