Myasthenia gravis: "I still want to do everything I can for myself"!

Hello Carmen, thank you for having agreed to share you story with us on Carenity.

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

My name is Carmen, I am 55 years old and I am married. I have two grown-up children, aged 35 and 20. I work in customer service for a taxi company, which is a lot of fun. At the moment I am on a sick leave because it is difficult for me to work on the computer because of my double vision. I have many hobbies: reading, anything to do with the Marvel Universe and American football.

The first symptoms of myasthenia gravis you experienced were double vision and dropping eyelid: how were you feeling and what did you think about the symptoms?

At first I didn't see it as a threat, I thought the symptoms would disappear on their own. I had no pain, but when my eyesight didn't improve after a week, I made an appointment with an ophthalmologist.

How many doctors did you see and what exams did you have to undergo before your diagnosis was finally established?

My eyesight wasn't improving, so the ophthalmologist who saw me immediately sent me to hospital, suspecting a stroke. At the hospital, they did reactivity tests, examined my veins, scanned me and then transferred me to the stroke unit for two days.

So your symptoms were at first mistaken for those of a stroke, how did you feel when you were finally diagnosed with myasthenia gravis? Did you manage to get all the information you needed in order to better understand the disease?

Myasthenia gravis was only suspected when I was first hospitalised. I had no identifiable antibodies and not much attention was paid to it. I was offered steroids and that was it. However, as there was no improvement, I was falling down the stairs at home and my eyes were causing me more and more problems, I went back to the ophthalmologist, who sent me to an eye clinic. The doctor there again suspected myasthenia gravis and sent a request to the neurology department of the hospital. The neurologist was very kind and immediately admitted me to the hospital. After a Tensilon test, a pharmacological test that consists of an intravenous injection of a drug that temporarily improves the symptoms of myasthenia gravis, the diagnosis was finally established. The attending physician gave me a brief explanation and recommended that I register with the Deutschen Myasthenie Gesellschaft, the German Myasthenia Gravis Association. Some information about medication and myasthenia gravis was given to me by the doctor who was treating me, but the Internet provided most of the information I needed.

What myasthenia gravis symptoms have you experienced so far? Are they invalidating?

The most invalidating symptom is fatigue, lack of strength and energy. I am a very active person and also very independent. Today I can't open my glasses case, for example, and it's difficult for me to walk. I live on the third floor, going up each floor is a torture, the lack of air is a fact.

Did you have to adapt your daily life to your condition when you were diagnosed?

Yes, absolutely! We have a dog, now the walks have become shorter and not so fast-paced. Working is not possible at the moment and I always have my folding cane with me in case I can't walk anymore. I don't dare to eat in restaurants anymore, because sometimes food falls out of my mouth because I have no strength left in my muscles. It's not a very pleasant sight.

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

I have been prescribed medication in hospital, which seems to be helping a lot. I regularly see my GP for blood tests. I will have to go back to the ophthalmologist soon as I am now more sensitive to light and have to wear sunglasses even indoors, otherwise it becomes difficult for me. I have to see my neurologist again in three months. So maybe I will change my mind about my treatment later, but for now I'm happy with it.

What has been the impact of myasthenia gravis on your personal and professional life?

At the moment I can't go back to work but I hope to be able to do so soon.

Things have changed in my personal life, too. If my husband could, he would wrap me up in cotton wool. We often have arguments, but I still want to do everything I can for myself. There are things I can't do any more, things that I need help with, like washing my hair.

Do you feel supported by your family? Do they understand your condition well enough?

My family are as supportive as they can be, and time will tell how understanding they are. I think it's hard for my family, because even as a patient you often have difficulty understanding the disease yourself.

What do you think about online patient communities like Carenity? Have you found advice and support you were looking for?

Online patient communities are absolutely important for gathering information about your condition, especially in my case, when it is a very rare disease. I wouldn't really call it advice and support, but rather companionship. But maybe it's also because I don't comment that much, I should motivate myself more.

What would be your own advice to other Carenity members who are suffering with myasthenia gravis?

Live your life the way you want it to be. You never know what will happen tomorrow, so make the most of every good moment!

Anything else you would like to add?

Thank you for being there, Carenity!

Many thanks to Carmen for sharing her story with us!