I often have patients who want a second opinion – either on their own initiative or at the suggestion of their treating neurologist or general practitioner. The second opinion is an important and meaningful tool, and also politically desired. Therefore, in my consultation hours, it is often about advising on a specific therapy, but almost as often also about the question of whether the suspected diagnosis of multiple sclerosis is correct or not. However, I am often surprised at how inadequately this “important” appointment is prepared. Hence a few comments on this.
The diagnosis of multiple sclerosis is usually not exceptionally difficult – especially if you follow basic rules. On the other hand, there are pitfalls that even experienced neurologists can stumble over. I’m no exception to this.
Second opinion on MS diagnosis: good preparation
The problem is that there is no definitive test for MS diagnosis. The diagnosis is much more based on considering many diagnostic tests, which then combine to form a suitable “overall picture”, similar to a puzzle. Not every part has to “fit”, but the overall impression should be right.
Symptomatology
An important aspect – perhaps even the most important – for the diagnosis of MS is the clinical manifestation of the symptoms. Typical symptoms of MS (as an expression of central demyelination) are, for example, unilateral optic neuritis, partial spinal cord symptoms (partial transverse myelitis), a bladder disorder or a Lhermitte sign – non-specific muscle or joint complaints, intermittent (short duration) symptoms or diffuse pain, on the other hand, are not necessarily typical. Accordingly, a careful history of the initial symptoms is of great importance for a second opinion. Therefore, as a patient, you should not be surprised if you are asked again exactly what symptoms triggered further diagnostics with MRI and lumbar puncture. Here, please do not refer to the letters (“it’s all there”) or repeat what the previously treating doctor said, but describe exactly what you felt and experienced yourself. The temporal sequence of symptoms and their dynamics is also important. You should prepare a little for these questions.
MRI
In addition to the clinical presentation, the MRI is one of the most important diagnostic tools. With the MRI, the essential characteristic of multiple sclerosis – namely the spatial and temporal dissemination (symptoms at different times in different places in the CNS) – is demonstrated today. When evaluating the MRI, it is therefore not only about the presence of lesions (“white spots”), but it is also crucial how these lesions look and how exactly they are configured. Inflammatory lesions are typically periventricular or juxtacortical – the presence of so-called infratentorial lesions and lesions in the spinal cord are also important for diagnosis. Therefore, it is absolutely crucial for a second opinion to not only read the written radiologist’s report, but to also look at the images themselves. Therefore, patients should bring the original images for a second opinion – or at least a current QR code to retrieve the original images. Sounds kind of logical, but it is often forgotten.
Cerebrospinal fluid finding
The cerebrospinal fluid finding also plays an important role in the diagnosis of MS, because this method can directly prove CNS inflammation. For the detection of chronic inflammation, the presence of so-called oligoclonal bands (OCB) is therefore often looked at. This examination often takes a little longer than the rest of the cerebrospinal fluid examination and is therefore often not in the “provisional doctor’s letters” that are given to patients, for example, after a hospital stay. Here, the line “OCB still pending – result will be reported later” is often found. Therefore, it makes sense to make sure that you bring the final findings before a second opinion. Of course, it is best if the complete original report is available to me for assessment – because it is not just the OCBs that show an inflammatory reaction – the cell count in the cerebrospinal fluid and the specific protein values can also be used for diagnosis.
Patients often also come for a second opinion precisely because no OCBs are found in the cerebrospinal fluid. This can happen – about 5 % of MS sufferers show no bands – and does not speak against the diagnosis if the rest of the findings are conclusive. Here, remember the comparison with the puzzle.
But even this comparatively “simple” question shows how important it is to present complete documents with original MRI and cerebrospinal fluid findings. Whether a presentation for a second opinion is successful therefore also depends on how well the visit is prepared and whether all relevant documents are available.
Many people affected by MS, by the way, keep their illness documents absolutely exemplary, I would like to mention that here. But sometimes I am also surprised when important medical documents are only taken out crumpled and unordered from tattered brown envelopes. These documents are at least as important as the vehicle papers – which are usually more neatly sorted than the medical documents.
Also interesting: “How do I prepare for a doctor’s appointment?” – Chat protocol of the AMSEL.
And: “Instructions for the doctor’s visit” – Tips from Prof. Mathias Mäurer.
