Living with Multiple Sclerosis
Martina Feichter studied biology with an elective subject pharmacy in Innsbruck and also immersed herself in the world of medicinal plants. From there it was not far to other medical topics that still captivate her to this day.She trained as a journalist at the Axel Springer Academy in Hamburg and has been working for since 2007 - first as an editor and since 2012 as a freelance writer.
More about the experts All content is checked by medical journalists.
Multiple sclerosis is most common in young people between the ages of 20 and 40. Many then started their first job, are in the middle of their training or are just about to make a career. Some have or want a family and children. Read how multiple sclerosis influences sports and travel activities as well as pregnancy and what consequences the disease can have for professional life.
ICD codes for this disease: ICD codes are internationally recognized codes for medical diagnoses. They can be found, for example, in doctor's letters or on certificates of incapacity for work. H46G35
Multiple sclerosis: job
Many MS patients can continue to work productively and without restrictions for years despite their complaints. If the boss and employees are open about the illness, there are many ways to adapt their work to the changed situation. However, multiple sclerosis can also limit physical performance to such an extent that patients can only partially or no longer exercise their original profession. In addition to physical disabilities, constant tiredness (fatigue) and poor concentration are very common reasons why MS patients have to retire prematurely from working life.
Address or keep silent?
For many, the question arises whether the supervisor should even find out about the diagnosis of MS. There is no general answer here. The climate in the workplace and the individual course of illness play an important role.
In an understanding work environment, MS patients can benefit from being open about their illness. The workload and the workplace can be tailored to individual needs. Colleagues can also adjust to the changed work situation.
In a less good working atmosphere, however, openness can have negative consequences - from the exclusion of the person concerned to termination. In the case of a mild course with rare relapses of MS, it might be better to keep silent about the disease. There is no general obligation to disclose - provided that continuing work does not endanger the patient himself or others.
Enlightenment creates clarity
If the MS patient has decided to deal openly with his illness, educational work is called for. Many people are not aware that the disease progresses very differently and does not necessarily end up in a wheelchair. If you inform colleagues and employers about your personal situation, you can avoid half-truths and false information. That creates understanding. In addition, only a well-informed environment can really support the person concerned.
Multiple Sclerosis: Limitations in the Job
The most common problems faced by MS patients in professional life are fatigue and cognitive problems such as poor concentration. There is also a risk of impaired vision or a lack of muscle control when using machines or behind the steering wheel. A doctor must then decide whether the patient can still do the job under these circumstances. If driving is no longer possible, even getting to work becomes a problem for many.
In addition to flare-ups, therapies and cures can also cause MS patients to be absent for longer periods of time.
Multiple Sclerosis: Adjustments in the Workplace
Despite possible restrictions, MS patients should not give up their profession too quickly. In consultation with the employer, for example, part-time work, additional breaks or a new field of activity can be agreed. Some patients also benefit from a lower room temperature. Access ramps for wheelchairs and an office close to the toilet can also be advantageous in individual cases. If normal work is not possible on site, working from home can be an alternative - especially since there is no need to travel to work.
Financial losses
Part-time work and incapacity for work mean serious financial losses for many patients. The Federal Employment Agency grants grants under certain conditions. The money is not necessarily linked to a severely handicapped ID card.
termination
The diagnosis "MS" is not a sufficient reason for a discharge, because the illness does not necessarily lead to a general incapacity for work. If the employee concerned does not consent to a medical examination, the employer can rely on the medical prognosis in the event of a termination or refer to the previous absenteeism. If there is a severe disability (degree of disability at least 50), there is special protection against dismissal. This means, among other things, that termination can only take place with the consent of the integration office.
application
If MS patients go looking for a job after being given notice, the question arises again: Should the disease be disclosed or not? Of course, companies have a legitimate interest in finding out about the chronic ailments of their employees.
On the other hand, general health questions are not allowed in the application process - so it is allowed to lie. In certain cases, however, the applicant is obliged to be open. If he cannot do the new job in full, he must indicate this - otherwise there is a risk of the contract being terminated in court. The same applies to a confirmed severe disability and if the date for starting work cannot be met due to illness.
Good jobs, bad jobs
The German Multiple Sclerosis Society (DMSG) gives tips on which professions are suitable for people with MS and which are less. Volunteering (e.g. in a self-help group) or artistic professions are practically no problem. Jobs with a high stress factor and night or double shifts are considered less suitable. Dealing with vehicles and large machines is also not always possible.
Another special case is civil servant status. The prerequisite for a lifetime appointment is a "dual capacity" certified by the medical officer (now and with a high degree of probability until reaching the age limit) - and this is usually not achievable for MS sufferers. The situation is different for applicants with severe disabilities: In principle, employment is possible for at least five to ten years.
In any case, MS patients should consult a (specialist) doctor before choosing a new position. With a written medical assessment, those affected can also better represent their (still) existing skills in the application process.
Multiple Sclerosis: Travel
People with multiple sclerosis (MS) don't have to go without travel. But it is important that the journey does not bring more stress than relaxation. Because some things with MS are more exhausting than expected in advance. This applies to language courses lasting several hours a day or extended city tours.
Protection against flare-ups
People with MS should carefully consider where to go and prepare for the trip carefully. Extreme climatic conditions and physical strain should be avoided.
Climate: MS patients should avoid strenuous hiking or climbing tours, trips to tropical regions or midsummer southern Europe. A humid, hot climate can exacerbate the typical symptoms of multiple sclerosis (such as fatigue and exhaustion). In addition, heat and physical exertion can sometimes trigger a flare-up. MS patients should therefore cool down regularly, especially in the hot midday hours, stay in the shade and avoid overexertion.
Vaccinations: In some cases, vaccinations are necessary before a trip. In general, vaccinations with dead vaccines (contain killed pathogens) or toxoids (contain only the toxins of the pathogens, but not the pathogens themselves) are generally possible for MS. These include vaccinations against tetanus, diphtheria, influenza, hepatitis A and B, meningococci and rabies.
Since vaccination recommendations can change quickly, MS patients who are willing to travel should seek advice from a vaccination doctor or a vaccination center in good time.
Basically, vaccinations are important to prevent certain diseases - not only when you are on vacation. Patients with MS, like healthy people, should have regular refreshments. When the best time for this is (with regard to possible relapses and administered immunosuppressants), patients can find out from their doctor.
Infections: A flare-up can also be triggered by infections such as the flu (cold). When traveling, you can catch a cold quickly, for example in air-conditioned rooms or if you are surprised by a downpour. Rain protection and warm clothing are therefore essential in your luggage.
Treatment of a nudge
An MS flare-up while traveling is treated in the same way as at home: with high-dose cortisone (cortisone pulse therapy). MS patients can use this relapse therapy on an outpatient basis if they have had frequent relapses and have tolerated the corticosteroid therapy well.
However, if a relapse is treated with high-dose cortisone for the first time, most doctors recommend inpatient treatment. The high doses of cortisone can (rarely) cause serious side effects. In addition, physical fitness tends to decrease, and many patients feel weak and tired during treatment.
Most European countries and the US have a sufficient number of competent medical professionals who are familiar with the treatment of MS. Only in special cases does it make sense to pack cortisone tablets, for example if there is no doctor nearby in the holiday destination or the hygienic conditions are poor. Patients should take them after consulting their attending physician.
Continue long-term therapy
Long-term therapy (basic therapy) should not be interrupted even while on vacation. Many MS patients inject the necessary medication themselves. At home, it is easy to ensure the necessary hygiene when injecting. This can be more difficult on vacation, for example at the campsite. Syringes, cannulas, medication, swabs, and disinfectants are best for MS patients to take with them from home. So that there are no problems (at the airport, for example), you should have a neurologist issue a certificate stating that the medication is urgently needed before departure. The document should ideally be written in several languages.
Many drug manufacturers offer a prepared customs declaration. The doctor only has to sign and stamp this. You can then take medication, cannulas and syringes with you on the plane. Under no circumstances should the medication be checked in with luggage - it could freeze in the hold and become ineffective. The immunomodulatory drugs must not be stored too warm or too cold. There are special cool bags, but the hotel also has a minibar or fridge.
Symptoms under control
Many MS patients are exhausted and tired quickly. Sufficient breaks should therefore be planned deliberately in the daily program. High temperatures and physical exertion can make tiredness worse or trigger a flare-up. A refreshing swim in the sea, a shower or a cooling vest provide cooling.
For men with urination disorders, a condom urinal with a leg bag is helpful on long-haul flights. Insoles are suitable for women. On the website www.cbf-da.de (Club Disabled People and Friends) MS patients can find the brochure "Der Locus" with a list of more than 12,000 toilet locations in Germany and other European countries. This club also has the Euro toilet key, which can be used to open more disabled toilets across Europe.
General travel tips
MS patients with paralysis are at particular risk of thrombosis. On longer journeys by car, plane or train, regular exercise helps prevent blood clots. Blood-thinning heparin syringes serve the same purpose. MS patients should speak to their doctor about this.
The humidity on board aircraft is often low, which is why you should drink enough - preferably water or other non-alcoholic beverages. Experts recommend 200 milliliters of liquid per hour of flight.
Private wheelchairs are checked in with the other items of luggage. The airline provides the traveler with a wheelchair. Rail travelers can call the rail mobility service on 0180 6 512 512 and register their journey. The employees help on site with getting on, changing and alighting.
Diarrhea is a common motion sickness. The affected person loses a lot of water and the medication may not be well absorbed. To avoid diarrhea, the advice of the World Health Organization (WHO) helps: "Cook it, boil it, peel it or forget it". Anything that has not been cooked or peeled by hand should not be consumed in unsanitary conditions. It is also better to avoid fresh salad and tap water. If "Montezuma's Revenge" has struck, an electrolyte solution with sugar, salt and water or a ready-made solution will help.
If the diarrhea is bloody, an antibiotic may be necessary. MS patients should find out more from their doctor before starting their journey and, if necessary, have a suitable preparation prescribed for them. The doctor explains in which cases it should be used and how.
Multiple sclerosis: exercise
For a long time, people with MS were advised against exercise and physical activity. Today we know, however, that sport and training do not have any negative consequences in MS, but can even have a positive effect on typical side effects of the disease such as limited mobility, weaknesses in strength, endurance and breathing as well as depression.
However, some MS patients do not enjoy exercising too much because they subsequently suffer more from sensory disturbances. However, an investigation shows that these sensory disturbances return to normal within about 30 minutes in most of those affected.
Strength and endurance training
Before MS patients lace up their athletic shoes, they should be examined by a sports doctor. He advises you which sport (strength and / or endurance training) and which training intensity is best in each individual case. In addition to personal preferences or aversions to certain types of sport, possible restrictions (such as paralysis) and individual performance also play a role in the creation of the sports program. Some patients feel so good that they jog, cycle, or ski. Others prefer less strenuous sports like walking or hiking.
Right measure
People with multiple sclerosis shouldn't expect too much and should always keep an eye on their own performance limits. This prevents the sport from doing more harm than good.
High-performance sport leads to extreme psychological and physical stress and can, under certain circumstances, significantly worsen the symptoms. Physical stress (especially at high temperatures and high humidity) can cause the body temperature to rise significantly. In some people with MS, the heat makes symptoms worse. It is important to cool off in good time or to do sports in the evening.
Multiple sclerosis: pregnancy
Up until the 1950s, doctors advised women with multiple sclerosis (MS) against pregnancy for fear that it could worsen the course of the disease. It is now known that pregnancy has hardly any negative effects on the disease and the symptoms that arise. It can even have a rather positive effect on the course of the disease: the relapse rate decreases continuously during pregnancy (by up to 80 percent in the last third).
In the first few months after the birth, on the other hand, the relapse rate increases. Later, the frequency of relapses usually settles back to the level before pregnancy. Overall, pregnancy does not seem to change the long-term course of MS.
MS: No danger to the unborn
Pregnancy and childbirth do not seem to be significantly affected by multiple sclerosis. There is no evidence of an increased rate of malformations or other changes in the child (such as decreased birth weight). However, if multiple sclerosis led to permanent symptoms such as paraplegia before pregnancy, these may very well affect pregnancy and childbirth.
Medication during pregnancy
Some MS medications can harm the unborn child and should therefore not be used during pregnancy or only to a limited extent. The following list gives an overview:
- Interferons: They can be used during pregnancy after a risk-benefit assessment by the attending physician.As a rule, however, they are discontinued as soon as women express a desire to have children or a pregnancy is determined.
- Glatiramer Acetate (GLAT): GLAT must not be used during pregnancy. However, ongoing therapy is usually only discontinued when pregnancy occurs.
- Natalizumab: The active substance must not be given during pregnancy unless the clinical condition of the woman so requires.
- Fingolimod: women should not become pregnant while using it. However, if pregnancy does occur, the drug must be discontinued.
- Mitoxantrone: Experts recommend stopping the drug at least six months before a planned pregnancy. This also applies to male MS patients who want to have children.
- Azathioprine: The active ingredient must not be used during pregnancy. Women and men should not father a child for up to six months after ingestion.
Childbirth and breastfeeding
Birth in women with MS is similar to that in healthy women. Nothing special needs to be considered here. Only women who have pronounced sensory disturbances or paralysis of the legs should be observed particularly closely in late pregnancy. For example, they may not notice the onset of labor as well.
Whether a mother with MS can breastfeed her child depends on the individual case. Some women are so exhausted with breastfeeding that they prefer to give a bottle. Others take immunomodulatory drugs that prevent the children from being breastfed. In principle, the World Health Organization (WHO) recommends that women with MS breastfeed their child for about four to six months, if possible, and then start MS therapy again.
MS: risk of inheritance
Children of MS sufferers are at higher risk of multiple sclerosis than children of healthy parents. The increase in risk is small, however: there is a 95 percent probability that the children of patients will not also develop multiple sclerosis. Incidentally, the slightly increased risk of illness mainly applies to daughters.
