Myasthenia gravis – symptoms, treatment

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Myasthenia gravis is a chronic disease related to the low resistance of skeletal muscles to even the slightest effort. Its symptoms may include drooping eyelids, mandible and head drooping, and breathing disorders. My strength began to decline rapidly. I lost my speech. They thought I was crazy, writes a woman suffering from myasthenia gravis.

Kamila, 31, picks up the cup to her mouth. – Until recently, I couldn’t do that. In the past, I couldn’t fasten a buckle, brush my hair, fasten a button, tie laces. Getting out of bed was a pain. Dress up, hard work. At first nobody understood me and the doctors didn’t know what was wrong with me. I saw a psychiatrist when I lost my speech. However, after a series of strong antidepressants, I didn’t feel any better. It felt like I was disappearing. As if I had a little less every day.

A child, death and a crazy mother, the first symptoms of myasthenia gravis

– My disease, myasthenia gravis, caught me when I was 22 years old. It came suddenly, though now, in retrospect, I think there were symptoms before. As I was growing up, my mother complained that I was lazy. And I was tired! I was developing properly, I attended school normally and… I felt chronic fatigue.

– When I was 18, I gave birth to a baby girl. I had a book about pregnancy and childbirth. However, shortly after Martynka’s birth my father fell ill. He suffered from cancer for two years. I helped my mother take care of him. At the same time, I was raising a tiny child and going to my first job, in the store. So when my father died and my health deteriorated, everyone took it down to nerves and exhaustion. A small child, my father’s death, my first job… A lot for a twenty-year-old. But it didn’t pass me by. In the store, during the morning shift, when there were still few customers, I fell asleep in the exchange office. It felt as if all my energy had been sucked out of me. Performing ordinary, everyday activities began to be close to a miracle. The girls at work were bad, the closest ones didn’t understand. Get a grip at last, don’t overdo it, you must be crazy, they said. I started to believe them.

Five minutes and… after all – the first attempts to treat myasthenia gravis

– First, I started treatment at a neurologist. First suspicion – multiple sclerosis. Panic at home. Cry. Fortunately, detailed tests ruled out the disease. Unfortunately, I still felt terrible. In the doctor’s office I heard: It’s not MS and… that’s it. I went to a psychiatrist. Again, in retrospect, I can see what a big mistake I made. When you don’t know what’s wrong with you, you’re depressed. I believed in the disease, because my beloved dad died, I could go through baby blues without even knowing. I was young, inexperienced, immature. And yet I was packed with a whole series of antidepressants, after which I only got hit in the head! When I was so weak my face twisted and I stopped talking. It didn’t matter to me, just to feel better! But the improvement wasn’t coming. Deep down, I felt the doctors were wrong. I decided to get tested in a different hospital, with other doctors. I actually broke into the neurology ward of the Medical Academy in Gdańsk and told the doctor whom I met in the corridor about myself. That I can’t take it anymore. She looked at me, asked a few questions, and gave me some kind of injection. It made me feel much better. It’s myasthenia gravis, said the doctor, and told me to stay in the ward. Detailed examinations confirmed the diagnosis, and I was wondering: what is it? I’ve never heard of myasthenia gravis before.

What is myasthenia gravis?

Myasthenia gravis is a disease that affects people of all ages, but the greatest number of cases is observed in 20-30 year old women and 50-60 year old men. In general, women get sick more often. Myasthenia gravis can affect the muscles of the pharynx, larynx, mouth, and respiratory muscles. This leads to speech disorders, difficulty biting and swallowing and breathing. When the disease spreads to the muscles of the arms and legs, every movement and step is difficult. Muscle fatigue occurs after even slight exertion. Symptoms of myasthenia gravis do not occur after a night’s rest. However, they worsen in the evening, when patients are tired of everyday activities.

Lost years

– Two years have passed from the moment of myasthenia gravis to the proper diagnosis. I feel sorry for this wasted time. Only in Gdańsk did the proper treatment begin. In addition to steroids, tablet chemistry and periodic immunoglobulin infusions, I started taking Mestinon 60mg. Every four hours, watch in hand. The drug helped, but it also had side effects. I was suffering from severe diarrhea and vomiting. Polyps in the intestines have grown. I was fed up with keeping track of the time, getting up at night. Well, but at least I’m not crazy! Family and friends began to understand. They knew that my good looks didn’t mean no problems. Patients with myasthenia gravis do not look bad. Rather, they do not show any disease. Therefore, when they complain about a permanent lack of strength, they are accused of laziness, puzzlement, laziness … Well, how? Can’t you press the doorbell? Hold the handset of the phone? People find it hard to explain something they don’t know at all. And myasthenia gravis is black magic for many. Even doctors have a problem with the correct diagnosis.

Myasthenia gravis and pregnancy

– In 2007, in October, I gave birth to my second daughter. We weren’t planning another baby. When I got pregnant, I panicked because I had been stuffed with drugs for months. However, I did not consider abortion for a moment. I persevered. Myasthenia gravis does not rule out natural vaginal delivery as the uterine muscles function properly. I was happy that my daughter was alive and well. It was worse with me. After the birth of Amelka, I completely lost my strength. Because of myasthenia gravis, I could do almost nothing with the baby. At that time, they liquidated the shipyard in Gdynia, where my husband worked as a locksmith. It was fortunate in the misfortune that during the prolonged period of notice, he could be with me at home, with my baby. Without the help of my husband, mother and parents-in-law, I would not be able to do it. When Amelcia was less than five months old, I had a so-called relapse. I stopped getting out of bed, I lost my speech. One night I thought I was going to die. The husband called an ambulance several times before they arrived. They did not understand how life-threatening myasthenia gravis can be. However, in the hospital in Wejherowo, they could not help me. I was taken to Gdańsk and returned to the living there. It was already known that I would not last long on the standard treatment. My myasthenia gravis turned out to be drug resistant.

– In 2006 I had an operation to remove the thymus. This is a common procedure in myasthenia gravis, as the thymus gland, which should disappear during adolescence, persists and often grows into a tumor. After removal of the thymus gland, symptoms of myasthenia gravis may subside. But in my case, after a temporary remission of the disease, there was always an acute relapse. The worst thing for me was that I couldn’t, have no strength, to hug my own children. We went through a terrible crisis in our marriage. Only now has collapse and depression come. I stopped answering the phones, I didn’t want to leave the house. It’s hard to explain when you’re lying down and can’t lift a finger. And it wasn’t because you lost feeling that you were paralyzed. The muscles just refuse to obey. You want, but you don’t have the strength …

Lek na miastenię — marchewka i kij

Finally a light appeared at the end of the tunnel. I found out from my doctor that there is a drug for miestenia available on the foreign market, which may work in my case. This is Mestiron, but in a much higher dose and with a prolonged effect. You don’t have to take it every four hours – two or three times a day is enough. The doctor wrote a prescription. We bought it in Germany. I took the first daily dose and… got out of bed! It was a miracle because I felt better by the hour. I felt an influx of strength to my muscles, I was regaining energy for life. Again, I was able to function reasonably well in everyday life. The drug turned out to be beneficial for me. After the first weeks of euphoria and paying for an expensive treatment from my own pocket, largely filled by my family and friends who decided to help me, I applied to the National Health Fund for a refund of another three-month dose. My application was approved. I was happy. I was getting better! When in April this year I applied for reimbursement of the next three months (the Ministry of Health does not provide for longer terms), this time I heard – NO. Why? Because there is Mestiron on the Polish market and I can take it. How about a dose that isn’t helping me? My problem…

I thought I was going crazy. It is like giving hope to a man and… taking it away immediately afterwards. I did not understand the officials’ decisions. I called, wrote appeals. Instead of living in peace, enjoying the improved health and family, I was arguing with officials and begging for a refund. I was terribly upset. Do I not deserve more than three months of relatively normal life?

Co dalej?

After the appeal battle, they gave me another refund. I remember calling the Fund for the ents time. This time I was talking to a woman. She listened to me. Then I heard a sharp exchange of views between her and a man about me. He insisted on taking my medication for miestenia, she argued that it was necessary. I was stupid to hear that and at the same time thought to myself: crap, this is how a woman fights for me!

Now I am after submitting another refund application. Time flies quickly and I’m sitting like a bomb again. There were weeks on the way where I had to fund the drug out of my own pocket. Discontinuation of treatment could prove disastrous for me. When I remember periods of progression of myasthenia gravis, I get goosebumps. It was hell, not life. I don’t want a repeat. I’m only 31 years old. Is it better for my children to live and raise them, or should I die and be replaced by my relatives or some institution? It is worthwhile for someone to ask themselves and such a question when a decision is made at the level.