Making the Invisible Visible: „Fatigue is often not recognised as a symptom of multiple sclerosis for years”

Tired, unfocused and worn out the entire day: patients suffering from multiple sclerosis can suffer from symptoms that are not recognized at first sight. This makes it all the worse for the affected.

01/06/2011

Dr. Peter Flachenecker; © private

REHACARE.de spoke to Peter Flachenecker, head physician at the Neurological Rehabilitation Centre Quellenhof in Bad Wildbach, Germany. He is a member of the advisory board of the German Society for Multiple Sclerosis and reports on a new testing method, and other ways to brave the invisible agonies.

REHACARE.de: Dr. Flachenecker, the world Multiple Sclerosis Day on 25th may had the slogan “I have MS. But nobody can see it”! Why was this slogan chosen?

Flachenecker: Most people associate the illness multiple sclerosis with physical restrictions, and often picture a wheelchair user in their heads. But MS has certain symptoms that aren’t directly visible – such as concentration problems, impaired vision or fatigue. And since these effects are not visible, some sufferers have little understanding for them. The slogan aims to call attention to this.

REHACARE.de: The fatigue seems to affect patients severely.

Flachenecker: Yes, that is correct. Patients suffer from constant drowsiness and feel weak. This can be compared to an infection that robs energy from you. And that constantly! There is little understanding and outsiders often react with sentences such as: ”Don’t make such a fuss, I am tired, too.” Additionally, there is the problem that patients often don’t know that fatigue is a typical sign of MS.

REHACARE.de: Why don’t they know? Surely, doctors should be able to tell them.

Flachenecker: Therein lays the problem: Not every doctor knows about the effects of MS. The fatigue is often not recognized as a symptom of MS for years, or it is incorrectly associated with psychological problems. Diagnosis of MS itself can take up to three and a half years, even if it can be diagnosed in as little as three months in the best cases. And not only do the doctors not recognize fatigue as an MS-symptom, often patients do not mention that they are constantly tired, because they assume: I am just tired. They struggle with this for years.

REHACARE.de: How can it be that doctors often know so little about MS?

Flachenecker: If you consider that GPs maybe have one or two patients with MS, and even neurologist rarely deal with sufferers, the answer is obvious. They lack the experience and knowledge in the field. Nevertheless, a lot has changed in the past ten years. In the past, understanding for MS, and especially fatigue was far worse; it was rather a reason for pity. That is different today, both with health insurances and social medicine. It is treated far more realistically, and recognized as an illness.

A well structured day can help when suffering
from fatigue; © panthermedia/JCB Prod

REHACARE.de: How does the symptom develop?

Flachenecker: Unfortunately, we are unable to tell. However, I suspect that it has many causes.

REHACARE.de: Is fatigue measurable?

Flachenecker: That is difficult. We at the Rehabilitation Center Quellenhof have developed a test in cooperation with our neuropsychological unit. Patients are asked to recognize forms and figures on the computer, and click them. We measure how fast the patients react and press a button. With these response times we can deduct how well the patients can concentrate. The longer they take, the worse the ability to concentrate. This allows us to classify fatigue. The Charité in Berlin has also researched this in a recently published study.

REHACARE.de: Why is it so important that fatigue can now be verified?

Flachenecker: I have found that patients are tremendously relieved that they now have a name for their suffering. It relieves them, because they don’t constantly have to think “I must pull myself together”. They can gain confidence and be at peace with the illness. Also, it is important to prove the symptoms when, for example, the ability to work is restricted. For the social-medical treatment it is easier to have facts at hand, to be able to evaluate the illness and its effects on the work life of a patient.

REHACARE.de: Is the fatigue-syndrome curable?

Flachenecker: Not yet. But the effects can be reduced. Sometimes with medication, which improve the attention span. But mainly the non-medicinal therapies can help. I need to become aware of how I balance my energies and when I need to take breaks. I need to structure my daily routine. And sporting activities can help, such as Nordic Walking, ergometer- and endurance training. Bringing themselves to do that may be more difficult for patients, but it is definitely worth it. Unfortunately, there is no general recipe.

REHACARE.de: If a patient feels badly counselled or has doubts about the diagnosis, is it ok to seek help from another doctor?

Flachenecker: They have every right to do so. But many patients don’t dare, even if it is important that they take part in the decisions. A good doctor would never say: Don’t do that. And it isn’t a good sign if a doctor rejects a second opinion. In Austria it is common to get a second opinion for important diagnoses. This saves a lot of money for the health care system on the long run, and saves the patient unnecessary waiting time and uncertainty.

REHACARE.de: How do affected people find professional advice?

Flachenecker: The Society for Multiple Sclerosis is a good starting point to meet the right contacts. It offers an overview of renowned facilities and clinics, focusing on multiple sclerosis. Often, you can talk to experts online and they will answer your questions. The new brochure “I have MS. But nobody can see it” also explains the invisible symptoms of MS.

The interview was conducted by Natascha Mörs.
REHACARE.de

- Read more about the German Multiple Sklerosis Organisation DMSG: www.dmsg.de