Patient Perspective on Brain Health Series

My story of living with Myasthenia Gravis (MG), a rare neurological disease

The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens.
— Eurordis

 

This is my story of a neurological disease where both the brain and mind’s health have are impacted.

The disease is Myasthenia Gravis (MG), a rare autoimmune and neurological disease. The main source of symptoms is the neuromuscular junction, which does not work properly due to antibodies. The symptoms may be double vision, difficulties with swallowing and talking, and muscle weakness in the arms and legs. The neuromuscular junction does not work because antibodies block or destroy the receptor of acetylcholine (the nerve transmitter).  This means that the message from the brain via nerves cannot reach the muscle and thus the muscle becomes weak and fatigued. With good medication and rest, your muscle will recover. This is what makes it so difficult to get a diagnosis!  By the time you get an appointment with your doctor, you may have fully recovered. When you try to explain your symptoms, the doctors may think that it is all in your head, a so-called psychological disease. It is important to note that if you are prescribed relaxing medication, this will even make the disease worse.  Thankfully nowadays, with the help of high-quality video on your mobile phone, it is recommended (if you can) to take photos and videos when the symptoms are “on”, so you can show your doctor that the symptoms are real.

Types & Treatments

There are different types of MG. The early onset variety is usual for young women and the symptoms start at around 20 years of age. The other big category is late onset, which is usual for men over 50 years old.  Then there might be cancer in the thymus (thymoma) and other antibodies which may block protein-based receptors (MuSK and LRP4) or no antibodies found at all (Zero-type).
For a person with early onset, like me, the treatment usually starts with thymectomy, as that has a great impact on getting the disease into remission. There is also a medication that is an acetylcholinesterase inhibitor. If this medicine does not help, you may be prescribed steroids to decrease your antibody production or even immunosuppressive medication. It takes usually a while to get the perfect combination and there might be relapses due to infections or stressful situations.

My MG Journey

My MG journey started when I was in high school with the first symptom being difficulty talking on the phone.  At 20 years of age, the symptoms became much more difficult, I occasionally could not talk and could not eat. My aunt, a nurse, booked a neurologist appointment for me, but as soon as I tried to talk with the doctor, I was speechless. I could not say a word and the doctor was so confused, but luckily instead of dismissing me, he sent me to the University Hospital.

There a doctor who was specializing in MG asked me to read loudly, then she gave me a therapeutic injection and at once I could again talk. It was a big relief, as I realized that I could get help with medication. This was just before Christmas, in the middle of the studying period, so we waited with the thymectomy until the next summer. At the operation, it was discovered that the size of my thymus had increased, although at my age it should have decreased. After some years of the thymectomy, I completely recovered and did not need any medication. However, when my studies were finalized and I started regular work, my symptoms started again.

The last straw was a dental operation that caused the symptoms to become so aggressive that I had to visit the hospital. There I got my first plasmapheresis (the antibodies from the blood are filtered away), up to four times, and then life became normal again. At the same time, I also started on steroid medication.

I had heard so much about the negative side effects of steroids, I wanted to get rid of them and under the control of my doctor, I managed to finish them.  However, after some months, my symptoms returned and had to be treated again at the hospital with plasmapheresis and a new course of steroids. My neurologist was of the mind that if I wanted to have children, I would have to leave the steroids, so I started another period without steroids which was, unfortunately, unsuccessful again. The symptoms returned again – difficulties with talking and swallowing.  Yet again, I had to return to the hospital.  This was now the last case as we re-started the steroids and immunosuppressive medication. Sometime later, I had an appointment with the gynaecologist at the University hospital and we went through my medication and checked which were suitable for a possible pregnancy. After those horrible years, I was finally able to end steroid medication through a carefully time-scheduled method and also the immunosuppressive medication.

My MG Today

My MG symptoms are really mild nowadays but instead I have sleeping difficulties. These might be a side-effect of MG because sleep quality is poor for MG patients. With poor sleep comes irritability and memory lapse. I worry a lot and that has given me hypertension, which is a typical comorbidity of MG. I also have diabetes 2, which nowadays is regarded as an autoimmune disease, but overall my daily life is not disturbed by MG. At the time when I had to leave the immunosuppressive medication, I decided to retire from my daily work. Now I have the time to work with the MG community and also enjoy other hobbies like gardening. It is not just a burden to have a life-long disease like MG, one of the upsides has been meeting a lot of people when I became active in the local MG community. By taking part in patient advocacy teams I have also had opportunities to visit other countries and meet MG people worldwide. I cannot complain about the treatment I have received.  If you think you are tired and have no energy to see other people, consider that social activity is vitally important for your brain and mind health.  So please, don’t stay at home with your disease, join your local community!

Regards,

Eva Frostell-Pyhäjärvi
MG-patient since 1976

 

To learn more about Myasthenia Gravis visit The European Myasthenia Gravis Association website.

 

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