“When You Have to, You Can:” a Myasthenia Gravis Story From the Czech Republic

“It’s like when you suddenly shut off control over your muscles. Your will can’t affect it at all. “I say that I’m a ‘physical schizophrenic,’ and I can only do what my body allows me to. When there’s a failure in the transmission, you can try all you like, but you won’t move. You can’t control your muscles,” Miriam Křivková explains. She’s lived with myasthenia gravis since early adulthood.

 

When I was 19, I was a normal girl. I did sports, went canoeing, went mountain climbing. But in the first year of college my eyes started to give me trouble. My eyelids drooped and I wasn’t able to keep my eyes open. I chalked this up to the effort you have to put in during finals, but when the condition remained even afterward, I went to an optometrist (who assured me that I was absolutely fine and sent me to a neurologist). There I underwent a special meeting with a doctor who examined me and gave me the right medicines, but didn’t tell me what I had. The medicines worked and I was relieved that I could see again. But to this day I don’t understand why that doctor didn’t tell me anything more. When I went to his office for the second time, he wasn’t there and I never saw him again. Soon after that I got to see Dr. Jedlička, who deals with myasthenia gravis (he diagnosed me in 1981). The doctor sent me for an X-ray to make sure I didn’t have a tumor on my thymus. Fortunately there wasn’t one.

My thymus was then operated on in September by Dr. Šmat, who was absolutely amazing. He explained everything to this confused 19-year-old girl and tried to calm me down. After that procedure there was a pretty big scar across my entire sternum, and the development of the disease was supposed to stop. I even hoped for a full recovery, but in the end it was in vain. I had to interrupt my university studies; I couldn’t study despite my best efforts. After a year of convalescence, I found work in a library.

 Myasthenia gravis is a rare neurological disease. It depends on the interplay of several factors, with individual factors varying in importance for every person. It is not yet possible to say that the interplay of this and that factor will definitely bring about the disease. In puberty, the thymus may not develop correctly; white blood cells start to behave in an adverse way and attack the cells of one’s own body. This occurs in the nerve connections to muscle fibers, so the nerve receptors are damaged and the muscle then doesn’t react to the nerve stimuli. Myasthenia gravis translates as “great muscle fatigue,” but this is an inaccurate translation because it’s not at all about muscle fatigue, but about disabling their control.

I say that I’m a ‘physical schizophrenic,’ and I can only do what my body allows me to. When there’s a failure in the transmission, you can try all you like, but you won’t move. You can’t control your muscles. And this applies to all striated muscles, which includes not only the arms and legs, but also the respiratory muscles, the vocal cords, ocular muscles, the chewing and swallowing muscles. When the body decides it’s tired, it shuts down the nerve connections. In the case of early diagnosis, it’s possible to prevent more serious damage, but even today people have to wait years for a correct diagnosis.

The beginnings were difficult. The onset of “inability” came very quickly at the time – from full abilities to complete immobilization within five minutes. Whenever – morning, afternoon, evening. I couldn’t promise anything to anyone. I asked, Why me? What’s happening to me?

I thought I could manage by force of will. But it didn’t work. I remember how I felt when I first fell on the sidewalk. You can’t get up. You can’t talk properly. Your eyes start moving, so you don’t see much. Passers-by think you’ve had too much to drink. Today I know that you just have to sit on the sidewalk for a little while, then it gets better and you ask someone for help getting up. But I fall to this day, though only occasionally. I recently fell down the stairs and got pretty banged up. You can’t prevent it. Your legs buckle and you go down. After a few decades with myasthenia, I can usually predict when a problem may appear, but sometimes I can’t guess, or I let my guard down. Today these rapid transitions are exceptional.

I was fortunate to have a good doctor. Immediately after the operation I went to Dr. Vejvalka, who did a fantastic job of caring for patients with myasthenia. When I went to any hospital, or for a more complicated examination, he informed the doctor in detail about my disease. He gave his all for us. Even during his vacation he’d go to visit patients all around the former Czechoslovakia.

Thanks to Dr. Vejvalka I also have a healthy son. When I was pregnant, I intentionally kept my diagnosis secret, because with myasthenia they used to send pregnant women immediately for an abortion. As part of this decoy activity he sent me for an examination to a gynecologist he knew, who confirmed that it was a normal pregnancy. We did not reveal the secret until the fourth month, when there was no longer the threat of an abortion. Unfortunately, Dr. Vejvalka died in 1991, but to this day his patients haven’t forgotten about him and he’s always the topic of conversation at various meetings. Today, in addition to the myasthenia clinic on Kateřinská Street in Prague, there are also centers in Brno, Plzeň, Ostrava and Hradec Králové.

I’ve always been a fundamental optimist and a fighter, and I approached myasthenia in the same way. It’s a fight against something you can’t influence, but once you know how to do it, you can learn to hide anything. I can do almost anything a healthy person can, but sports have been permanently banned; I can’t handle the long-term burden. Individual “burdensome” activities have to be relatively short. At work they’ve tried to accommodate me, and I can plan my work, which includes several different activities, mainly according to my needs. For me it’s important to get my body moving first thing in the morning. Then I can handle things better the whole day. Getting into the “tempo” in the afternoon is a lot harder. When I recently reported to a new general practitioner and announced that I only have myasthenia and severe migraines but I’m otherwise healthy, she laughed and said that she doesn’t hear that too often and that she’d take me. She had only studied myasthenia and hadn’t encountered someone with the diagnosis yet.

From my long-term experience I have to express my great appreciation for our patient organization, MYGRA-CZ, and all such organizations in general. You can come over, learn something, find a helping hand and meet with other patients. This wasn’t at all the case in the 1980s. I met two girls at age 19 in connection with my thymus operation. One prepared me for my operation and then I prepared the other. I didn’t know anyone else with this disease. I’m quite concerned that today there are a growing number of older people with myasthenia, and these people can be really hopeless in their solitude with the disease. The inability to control your sphincter muscles is one of the manifestations of myasthenia. When you have to go to the bathroom, you have to go immediately. You don’t have the luxury of a few minutes. This has been my nightmare since I was 19 and I’ve had the bathrooms in Prague mapped out like no other. But if a person gets it at an older age, it can be very stressful. And stress significantly worsens the manifestations of myasthenia. The helping hand of the association can be crucial for these people.  The worst is the isolation and the confusion and fear that stems from it. When there’s an association, you’re not required to join it, but what’s important is that you have the option.

People must not underestimate myasthenia – you’re never “in the clear.” I’ve known this full well since 2003, when, after more than 20 years of being in relatively good condition, I collapsed. At that time I was in a difficult personal situation, under stress and overstretched. I was aware of various signals for some time, that a problem was coming, but I ignored them and believed that I could somehow withstand it. But then it all came down at once and I ended up in the hospital. I couldn’t move, and they gave me corticosteroids and immunosuppressants. My weight went down to 40 kilos (88 pounds). When they let me go home, my husband and son literally had to help me to my feet. I wasn’t able to get up from the table without support.

At the time, my son was 17 and he was really unhappy. Of course his whole life he knew that I was sick. He was used to his “lazy” mom, but only then did he become fully aware of it. I couldn’t be unattended, and I dragged my feet instead of walking – even the curb was a problem that I couldn’t handle on my own. Stairs or getting on the tram or bus – that would be pure fantasy. Over time I gained strength and stopped taking corticoids. Aside from the basic medicines I’ve been taking throughout my disease, I remained “only” on immunosuppressants. Eventually after a year I got to a condition that was just a bit worse than before the collapse.

Two years later my dad had a stroke, and of all the family it was simplest for me to pack up my things and move in with him so that he wouldn’t have to go into long-term care or some other facility. I never would have believed that I could manage it with my disease. I actually needed to try it so that I wouldn’t blame myself for giving up without a fight. That I’d be able to do it for an entire three years is something I wouldn’t have hoped for in my wildest dreams, but without the immense support of my whole extended family (including doing part of my work on a computer from home), I really wouldn’t have been able to do it. I think my dad’s lifelong motto, “When I can, I can help” helped me, along with my own, “When you have to, you can.”

I’m a realist. I have accepted myasthenia as an integral part of my life, but I’m never going to make peace with it. I find that it has many forms, and just as it eases up somewhere, it adds on somewhere else. I have periods where I walk poorly or talk poorly, or that I see badly. The days when I feel absolutely without any symptoms are as rare as four-leaf clovers. I can’t completely ignore my disease, but despite it I try every day not to give up. Every night is wonderful when I can say that today, once again, I’ve won.

by Miriam Křivková

Note: This rare patient story is the third in a six-part series that features rare patient stories from the Czech Republic. Tune-in on Wednesday mornings to read these accounts from rare disease patients.


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