Myasthenia gravis: "I'm not ready to give up on my life because of my illness!"

Hello MiaAndMe, thank you for accepting to share your story with us on Carenity.

First of all, could you please tell us a little bit about yourself?

I am 45 years old, married, I have three children (20, 14 and 8 years old) and a dog. I am a self-employed midwife and before that I was a nurse. I like to read and sing and I like to be active (hiking, travelling), but at the moment I feel rather limited in this area.

You were diagnosed with myasthenia gravis. Can you please tell us more about the first signs of this condition? What prompted you go to the doctor? How many doctors did you see and what tests did you undergo before diagnosis? 

After the birth of my youngest child (about 2 years later), I developed vision problems which I was only able to improve for a short period of time with the help of various aids: what worked for a week or two suddenly became completely useless. Even a year later (2017), I was struggling to hold my head up after physical activity, to lift things off shelves or take them out. I took it easy at first (which helped), but I asked my GP about it at my next check-up (I'm over 35). We worked closely together; at the time I was still working part-time as a nurse in multimodal pain therapy. My colleague, a neurologist, was also part of the team. My family doctor referred me to him and from the very beginning he suspected myasthenia gravis and referred me to a hospital care team. There I was given Mestinon, which helped me a lot.

But my tests were still inconclusive (no decrease) and no antibodies were detectable, so I was given neither prednisolone nor azathioprine. Then, until last year, I was treated at a university clinic in a very friendly way, but without much courage to make a diagnosis, and my appointments were often cancelled. There I was first treated with prednisolone, then azathioprine. Then they suggested I go to an outpatient myasthenia gravis centre.

I am now a patient there. When I have the appointments (every six months), I stay overnight at a hotel. I can't do otherwise because travelling time (three hours) is not manageable for me twice in one day. But it's worth it: the professionals who work there look after many myasthenia patients, have a lot of experience and do research in this field themselves.

What was your reaction when you were diagnosed? Did you receive enough information about the disease? 

Being confronted with a problem whose name and scope I do not know is very stressful for me. Therefore, the (presumed) diagnosis was initially a relief for me: I know what I can do and, at least theoretically, where my limits are. However, this is a learning process that has to be continued, I am surprisingly resistant to knowledge and apparently I like to hit a wall again and again. The information I received was very comprehensive. I can't say why I have only now joined the DMG (German Myasthenia Society). In any case, this is another very positive step.

What are the symptoms of myasthenia gravis? Do you find them disabling for your everyday life?

Many patients report double vision, reduced vision or drooping eyelids (ptosis) at the onset of symptoms. In my case, it was "only" visual disturbances, I never had ptosis. An acquaintance said that it was a disease with "a thousand faces". That sums it all up. The battery runs on 60%, I think. Where people can still walk, sit, eat, I end up giving up. When the effect of Mestinon wears off, I can't keep my head up and my body straight. When things go wrong, I have difficulty speaking, I choke on my food, I trip over my own feet.

If I take Mestinon late at night for a (rare) evening event, such as wedding, I last a little longer into the evening, but I pay the consequences with at least two bad days and no strength. I have a certain amount of walking per day that I can do. If I think I have to walk early in the morning, I finish at noon... Taking the train back and forth is very tiring for the muscles that support my neck, even a visit to the hairdresser can tire me to the point that the day is over for me. We bought a sofa with a large reclining surface: if I have to rest, there is always room for other family members near me!

Have you adapted your way of life to your condition since the diagnosis? 

Absolutely: I don't work at the clinic anymore. I wouldn't be able to organise shifts with medication, or do night shifts, for example. For this reason, I only work during the day. In my second job as a midwife, I am involved in prenatal and postnatal care. My hair has given way to a very practical, short (very short) haircut: it's easier for me to go to the hairdresser regularly and not to have to hold my arms over my head for minutes in the morning to lift it up. In my everyday life, I have to decide (the decision is pretty much made by myself): do I work or do I do nothing today? A walk in the city after work is not possible, for example.

What is your current treatment? Are you satisfied with it?

I take 150mg azathioprine and 90mg Mestinon in the morning at 5am, then I lie down for 30 minutes so that the effect of Mestinon kicks in when I get up. Then, I take 90 mg of Mestinon every three and a half hours throughout the day. Am I satisfied with this? That would be saying a lot! But on the whole I am rather satisfied. I can't do more and I'm not getting any better at the moment. That's the way it is. Everyone has a limit in something, mine is physical. I'm not ready to throw my life away because of that.

How does the disease affect your personal and professional life? 

I can only plan to a certain extent how much work I will do on a given day. On days when there are more than five hours of work, I have no private life. It's a forced choice. I try to take a lunch break so I can go out with my family in the afternoon, or early in the evening. The longer the day, the less strength I have. High temperatures make it difficult to do anything: my medication is temperature sensitive (so the cooling system always has to work when I'm out) and muscle weakness is much more intense (for me) when it's very hot. What if my family still wants to go south for a holiday? We look for compromises: an air-conditioned flat, for example.

Do you feel supported by your family and friends? Do they understand your condition? 

Yes and no. It is difficult to put yourself in the shoes of a person with muscle weakness. One minute we want to live a normal life, the next minute it seems impossible. Myasthenia is more pronounced when an infection occurs or when I have my period. I have to communicate clearly without being dismissive. This is often difficult. Even attempts to pay attention to me are sometimes futile: nobody enjoys it when the whole family gives up on an outing ("No fun without you...") because my battery is low. This puts me under pressure. But in my personal environment, most people are really willing to learn more about the disease.

It is interesting that I was not granted a GDB 50 (degree of disability, which corresponds to severe disability) because my muscle weakness is not permanent (reason for rejection). I find this incredible. I can only do part of my job, my free time is limited, I am dependent on help at home (does anyone have any idea how difficult housework is?). If I wasn't so privileged, with a highly motivated family and a flexible job, I would certainly be in trouble and this is where I lack understanding for the rejection of the GDB and a special license plate. The person who is ill depends on this support.

What do you think about online patient communities like Carenity? Do they help you find support and information you are looking for?

Information exchange between patients is essential. Where can you find help? Which clinic offers good rehabilitation possibilities? I can't stand the medication, how did you cope with the adaptation phase? But you also have to share something about yourself. That takes courage. I don't always do that either!

What would be your advice for Carenity members suffering with myasthenia gravis? 

Look for an outpatient clinic that deals exclusively with myasthenic patients and accepts long distances: it is worthwhile. Five nights in a hotel in the first year is better than five years of unsatisfactory therapy.

Anything else you would like to add?

Healthy or not, we want to achieve satisfaction in life and each of us has to clearly formulate for ourselves what we need to do to achieve it. Personally, I need a secure base and short-, medium- and long-term goals, and then I feel that my life is worth living. Today I want to have fun with my family and to be able to do my job well. In the medium term, I expect to have well-planned trips. In the long term, I want to leave a positive and meaningful impact on the lives of those around me. I can only do this by building on my foundation: my firm faith in Christ and his good plan for our lives.

Many thanks to MiaAndMe for sharing her story with us on Carenity!