Hello there! I am writing this article via translation. So there may be mistakes in my explanation, sorry..
I live in Istanbul, Turkey.
I am 42 years old female and got MG in 2018. The first symptom was my inability to swallow. I stayed in the hospital for a long time and after 5 months I was able to drink liquid foods drop by drop. During the hospitalization process, my walking was also impaired. 25 grams per month. I'm on Ivig treatment and on a drug called Mytelase. I'm fine.. However, I still can't swallow normally. I swallow the meals and liquid foods by sliding them up to the size of chickpea grains. They tried Mapthera but it didn't help and now my Eculizimab treatment will start after 1 week with the approval of the Ministry of Health. The Ministry said that as a seronegative Mg patient, I am the first patient in Turkey and the seventh in the world to receive Eculizimab treatment.
It's more likely to cause the meningitis vaccine. For this reason, preventive vaccination was given first. when i become immune (a 2 week period) they will hospitalize and start medication.
I am so afraid. I am terrified of contracting meningitis.
There are not enough publications about MG in Turkey. Doctors are very successful in this disease, but mine turned out to be resistant. My professor says that there is no one who can't swallow normally after 5 years.
I am constantly searching for foreign publications about seronegative mg. but I could not find information about eculizimab. Probably, but I can't find it.
Sometimes my muscle aches feel like they're going to kill me. However, pain was rarely seen in mg.
I am running out of strength to fight this disease that has destroyed my job, my marriage, my social life, my joy, my happiness (so to speak).
I'm laughing at the psychiatric support now. When he recommended a book that said 'living is good', I said to my psychiatrist, let's go from there, looking at his face.
I hope you will publish this article and someone will enlighten me.
Hopefully..
because I'm about to lose the light now and I have no idea where to find it.
And I hope people reading this post! we will all be fine