Hi!
Iīm a 32 year old living in Sweden. I have suspect MG. My symptoms started last year, in aug. It all come very sudden and my legs just gave out on me. I had been tired a long time before but didnīt know why. Maybe stress I thought. I also had some problems with my eyes but I have linses and thought that was the problem. The legs came back to normal after I have rested. When it started in my arms and hands. Iīm a nurse and my work is very physical. I began to drop things and couldnīt hold and lifting. Everything was heavy! It was sometimes difficult to walk, my balance was bad and sometimes my legs just didnīt come with me. In january I have to quit working and stayed at home.

I did go to the doctor already in aug, after my legs had gived out on me, but he said it wasnīt anything special. In nov. I did go to the doctor again but they didnīt do anything. In jan I tried to work 50 % but after a couple of hours I couldnīt even walk around. The doctor didnīt believe me and the symptoms came and disapeared, so confusing. In march I was finally send to a neurologic who immediately mentioned MG. They tock the bloodtest - both Achr and MUSK - both came back negative. I was send to EMG och RNS - both normal. Then they did a SFEMG in my right overarm. At the same time my left eye started to droop in the afternoon, I had doublevision and couldnīt focus and started to have this heavy feeling in my chest. Even my neck sometimes just fell because I couldnīt hold it up. All this test was negative and the next doctor I meet said that this is probably not MG.

I april I was very bad, my legs gave out on me, I fell at home and couldnīt get up and I have problem with breathing. I was at the emergancy clinic and two nights at hospital, but the doctor just said - this is absolutely not MG and nothing else. Itīs all in your head. It was so terribal, I know something was very bad with my body and no one listening. I couldnīt even walk on my own but they didnīt care. I was in tears and they sent me home. Here in Sweden you canīt change doctor very easily but my family started to tried to get me to another doctor. I live on my own, four stairs up and I couldnīt managed it. I fell in the stairs, couldnīt carey my food and so on.

During the summer I become much worse. I couldnīt stand the heat. I had trouble to chew and then even to swallow. It was like a lump in my throat. I was at the hospital again and they took an MR - also negative. In aug. I finally came to a another doctor at the biggest hospital in my area. He said all this pointed to MG but the test are still negative. In sep. he put me on Mestinon 30 mg x 4. I immediately noticed a different. My legs became stronger, I could swallow better and so on.

I still donīt have a diagnosis beacuse of my neagtive tests. Only the x-ray showed an enlarged Thymus. At the moment I eat Mestinon 50 mg x 4-5/day. And it really helps me. I still canīt work, but I can managed my daily things. Now I have thousands of thoughts about the future. I find it so hard to live with this disease, it so unpredictable. I can feel worthless sometimes, it is so much I still canīt do. And itīs so isolating, have to be at home so much. Because of the negative testresults my doctor want put me on anything more than Mestinon and iīm really worried about that. Is that really enough?! Itīs so hard to not have a real diagnosis, it feels like the doctors donīt really take it so serious. But my symptoms are really serious. Specially the heavy chest and shortness of breath, I hate that feeling. I donīt know if I ever can go back to my work as a nurse, itīs so heavy! My doctor donīt give any answers, he just said - itīs up to you. You are young, and itīs a pity if you canīt work. And your diagnosis is not clear yet.

Iīm so tired of this. I just want all the help I can get and my life back! This isnīt a choice. Why do the doctors put so much guilt on us?! I have read on this forum for a long time now, and it really hold me up in my darkest moments. In Sweden, which is a little country, itīs hard to find other people in the same situation.

Sorry for this long text, I just wanted to share my story because I feel so alone and depressed. And I have really doubt on my self during this trip. Itīs so terrible to hear - itīs all in your head!