In Many Cases, Multiple Sclerosis Starts Long Before the Diagnosis

Summary: More frequent hospital and doctor’s office visits in the years leading up to multiple sclerosis diagnosis with early MS type symptoms are usually associated with a prodromal phase of the disease, when they should be regarded as an ongoing progression of the autoimmune disorder.

Source: TUM

Persons suffering from the autoimmune disease multiple sclerosis can develop various neurological symptoms caused by damage to the nervous system. Especially in early stages, these may include sensory dysfunction such as numbness or visual disturbances.

In most patients, MS starts with recurring episodes of neurological disability, called relapses or demyelinating events. These clinical events are followed by a partial or complete remission.

Especially in the beginning, the symptoms vary widely, so that it is often difficult even for experienced doctors to interpret them correctly to arrive at a diagnosis of MS.

Above-average numbers of medical appointments

It has been evident for some time, however, that patients with MS show significantly higher numbers of physician visits and hospital admissions even years before the first diagnosis as compared to healthy control persons. In recent years, specialists have seen this pre-diagnosis period as a possible prodromal phase of the disease.

MS often begins far in advance of the diagnosis

A new study carried out by a team working with the neurologist Prof. Bernhard Hemmer at TUM suggests that many complaints prior to diagnosis might not represent a prodromal phase. “Instead, we suspect that unrecognized MS relapses cause these individuals to seek medical attention,” says Prof. Hemmer.

“That is because we have found that the physician appointments and hospital admissions frequently involved complaints indicating typical MS symptoms. We believe that many complaints that have been attributed to a prodromal phase are in fact caused by ongoing disease. We therefore believe that, although the disease has not yet been diagnosed, it is fully active and not in a preliminary or prodromal phase.”

A path to an earlier diagnosis

The results of the study could also open up possibilities to optimize MS treatment: “The sooner MS is recognized, the better we can treat the disease,” says first author Dr. Christiane Gasperi, a physician and researcher at the Neuro-Head Center at the TUM Klinikum rechts der Isar.

“We now need to take a closer look at which early symptoms of MS might be overlooked. This could allow us to recognize the disease at an earlier stage and thus enable earlier treatment initiation.”

Less frequent respiratory tract infections

Along with the more frequent complaints in the years before an MS diagnosis, the results of the study also showed that persons with MS were actually less likely to seek medical attention for upper respiratory tract infections.

This shows a brain under a table lamp
The results of the study could also open up possibilities to optimize MS treatment. Image is in the public domain

“This was unexpected, in view of the fact that MS relapses have sometimes been associated with infections,” says co-first author and Adjunct Teaching Professor Dr. Alexander Hapfelmeier of the TUM Institute of General Practice and Health Services Research.

“However, future studies will be needed to determine whether there is a causal link between MS and a degree of protection against certain infections, or whether the health data we analyzed reflect protective behavior adopted by persons with MS.”

About this multiple sclerosis research news

Source: TUM
Contact: Bernhard Hemmer – TUM
Image: The image is in the public domain

Original Research: Closed access.
Systematic Assessment of Medical Diagnoses Preceding the First Diagnosis of Multiple Sclerosis” by Christiane Gasperi et al. Neurology


Systematic Assessment of Medical Diagnoses Preceding the First Diagnosis of Multiple Sclerosis


To explore the occurrence of diseases and symptoms in the 5 years before diagnosis in patients with multiple sclerosis (MS) in a case-control study.


Using ambulatory claims data, we systematically assessed differences in the occurrence of diseases and symptoms in the 5 years before first diagnosis in patients with MS (n = 10,262) compared to patients with 2 other autoimmune diseases, Crohn disease (n = 15,502) and psoriasis (n = 98,432), and individuals without these diseases (n = 73,430).


Forty-three ICD-10 codes were recorded more frequently for patients with MS before diagnosis compared to controls without autoimmune disease. Many of these findings were confirmed in a comparison to the other control groups. A high proportion of these ICD-10 codes represent symptoms suggestive of demyelinating events or other neurologic diagnoses. In a sensitivity analysis excluding patients with such recordings before first diagnosis, no association remained significant. Seven ICD-10 codes were associated with lower odds ratios of MS, 4 of which represent upper respiratory tract infections. Here, the relations with MS were even more pronounced in the sensitivity analysis.


Our analyses suggest that patients with MS are frequently not diagnosed at their first demyelinating event but often years later. Symptoms and physician encounters before MS diagnosis seem to be related to already ongoing disease rather than a prodrome. The observed association of upper respiratory tract infections with lower odds ratios of MS diagnosis suggests a link between protection from infection and MS that, however, needs to be validated and further investigated.

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  1. I began having MS symptoms by the age of 12. I began by falling down stairs frequently. I was labeled clumsy. I married when I was 24, had my first child at 25 and a huge relapse after he was born. I did not know what the issues were and the MRI had not yet been invented. After my third child, at 29 years old, the issues became life threatening. My uterus literally fell from my body right after I gave birth. I was rushed into surgery before my baby was an hour old. For over 2 years I was in and out of hospitals. When I was 43, I fell at a live event I was producing and that one fall and the impact it had on my spine and the fact that my bladder was holding 4 liters of water, began a race to save my life. With a diagnosis, I was finally able to know why I was a klutz and why the level of pain was way off the charts. I was given enormous amount of pain killers which I did not take as I was afraid of addiction. I still had three kids at home to raise. I have found that ones diet can become crucial. I eat at least two pounds of cranberries a week, I drink Hemp shakes, I do not eat much meat as I find it difficult to swallow, especially since I had uremic poisoning when I came into the hospital at 43 and they had to repair my esophagus. I am a big fan of Organic anything. Life is filled with challenges and your attitude toward your situation can literally make or break you. No doctor wanted to see me after I left the hospital as they didn’t want a patient that had an illness they could not control. I had to wait until ACA came along before I could go back to a doctor. I have a good doctor now. I live a regimented lifestyle as that works for me. I have channeled my talents into writing scripts and stories that uplift and inspire. It is the best way to deal with MS. Reach out and see if you can help someone that is suffering and had no idea what to do. Thank you for you time.

  2. This is true of most diseases. They take their time formulating and if the body’s defenses become overwhelmed or interfered with, the disease will prevail. The question then becomes what happens within the body to cause these difficulties…not what we can do after the fact. This is where science and medicine are still in the stone age. Or, perhaps finding causes doesn’t make a profit whereas selling and marketing drugs after the fact does.

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