Specifying a diagnosis
Specifying a diagnosis correctly requires patience on the side of the patient as well as a physician. Changeability of symptoms is typical for myasthenia. An experienced doctor will be interested in time, when first symptoms appeared, how problems are linked to concrete physical activities during daily activities. The clinical examination is based on a muscle test for "endurance" and should not be extremely stressful for you. Taking a blood sample and determination of antibodies is done for every patient suspected of myasthenia. The electromyographic examination is a bit unpleasant but you do not have to be afraid of it, as long as you know that the electric impulses and their frequencies are very small and will cause moves of your limb not controll ed by your will.
Finding out that you suffer from myasthenia gravis can cause great concern in some. The disease is different in every patient. Even a milder form of the disease, so called eye m yasthenia, is very unpleasant, double vision makes orientation worse, causes dizziness, the eyelid drop results in a functional blindness. On the other hand, rapidly proceeding forms of the disease are linked to the risk of danger of one´s life. However, it is necessary to realize that in most of the cases it i s possible to get the disease under control. The important thing is to re-evaluate life priorities. It is necessary to tell important from marginal, make your attitude to your job clear, have support of your significant ones, your doctor should be your partner, who´s aim is to help you.
Patients´ stories
Authentic testimonies of patients are the most suggestive ones – they will share them with you at the following links
Clete Gress: Beyond The Limits of MG
Kosch inspiration
Heather´s experience
David about myasthenia gravis
Collaboration at the therapy
Collaboration at the therapy is very important in myasthenia. It was discovered that in many chronic diseases patients do not take the medicaments at all or at their discretion. This attitude can be fateful in case of myasthenia gravis. The doctor you trust will explain how to take the medicaments to you, and if any undesirable side effects appear, he will find a solution.
A recommended operation will not make anyone happy, neither you. If it is absolutely clear that the thymectomy is the principal therapeutic measure, which is able to improve your disease, do not refuse it. You may wonder, why you should undergo an operation, if your disease improve by help of medicaments. There is a certain paradox, because your doctor will not refer you to an operation, which is a preventative measure and serves to a long-term stabilization of the disease in a bad state!
Rehabilitation
The dogma that the patient with myasthenia must absolutely protect himself and is not capable of any movement has been obsolete for a long time. Because this disease is very diversiform and can affect everyone to a different degree, it is not possible to proceed the same way. The situation will be different for a young woman, who is after an operation, 3 years without problems, than for an older patient, who is 20 years since the beginning of the disease, whose muscles are completely weak. It is obvious that the longer myasthenia with a certain residuum of weakening and a necessity to take medicaments lasts, the more it disturbs muscle coordination, which paradoxically makes the fatigue even worse. We recommend exercises with elements of yoga, recently tai chi, exercises according to Pilates and suchlike. Regular swimming is excellent, short or medium walks and suchlike. There are very specific exercises necessary for men after 50 years of age, who are more prone to steroid myopathy (when taking higher doses of corticoids), which manifest itself by weakness of mainly thigh muscles and rest weakness in lower extremities. Here we recommend isometric exercises - stretching of thigh and gluteal muscles nut without performing a movement.
Diet
Change of diet habits in myasthenia is related to the need to re-evaluate most of life priorities. Generally, it is necessary to change the menu, focus on “light” food (white meat, vegetables, fruit, enough fibre an suchlike.). Too salted and spicy dishes are absolutely unsuitable, e.g. tinned food, salami and suchlike. Too much sugar and animal fat is not good as well. Very specific diet applies for the period of taking corticoids, when there is a tendency to weight gain, water retention and degradation of proteins.
Pregnancy and confinement
At present time it is possible in case of a well stabilized disease to get pregnant, give a bitrth and bring up a healthy child. We cannot exclude the possibility of assisted reproduction. Gravidity is in most of the cases well tolerated, the immune system gets into a decline. Especially in the past a 10% risk that a newborn with symptoms of a infantile myasthenia (antibodies gets through
placenta into its blood) will be born, was described. At present time we can see such cases only rarely but we recommend that the birth should take place at such a workplace that has experience with these problems. It was proved that the risk of the infantile myasthenia is lower in mothers who underwent thymectomy. It is recommended to plan admission in advance. The birth is usually lead in a natural way, it is possible to ask for epidural anesthesia. I any case the newborn child should be at a monitored bed and mother should stay at a maternity hospital 7 - 8 days minimum. We do not strictly prohibit breastfeeding but is suitable to breastfeed 8 - 10 weeks maximum. The longer breastfeeding is, the higher luteotropin level in the blood is and so is the risk of worsening of myasthenia. Taking hormonal contraception is not dangerous, it is rather advantageous for prevention of unplanned conception.
Vaccination
In case of taking immunosuppressive medicaments (Prednison, Medrol, Imuran, Azaprin, CellCept...) any vaccination is dangerous. The balance of immune functions is disrupted and a significant reaction to the vaccination can appear. In case that you do not take these medicaments, individual approach is necessary. Generally, in myasthenia, vaccination by live weakened vaccines is not recommended, because they have a tendency to fire up the immunity system to higher activity. Vaccination by inactive vaccines is less risky (hepatitis A, B...), less risky is vaccination by adjusted toxins (tetanus).
Travelling
In patients who are in a good shape for a long time travelling even for long distances does not represent any big risk. It is necessary to have on you a confirmed declaration about medicaments you take and also a medical report. In case of travelling by plane have a supply of medicaments in your cabin baggage in case your luggage gets lost. When travelling to the Mediterranean or even warmer climatic zones, it is better to go there in low season, when temperatures are not so extreme. Avoid sunbathing between 11.-15.00. Do not go to the sea alone. When travelling into exotic countries ask your treating physician for advice regarding vaccination (see the previous chapter).
General advice
- Do not succumb to mental stress. Depression can make the disease worse but it can be treated!
- protect yourself against infections, do not visit risk environment during the time of epidemics (cinema, theatre, exhibitions, public transport...), avoid risk areas on holiday, get your doctor´s advice about vaccination.
- not leave things to the last minute, plan your work.
- Carry a list of all medicaments you take on you, many medicaments can cause undesirable side effects, some are not suitable.
- Avoid undesirable rehabilitation procedures (warmth, ultrasound...).
- Keep adequate body weight. Every kilo extra overloads your locomotor system.