In Remission, But Still Scared...

I was diagnosed with MG after several trips to the emergency room, not having any insurance or a regular dr I really didnt know what to do. I went to walk-in care once but they sent me directly to the emergency room due to the fact one half of my face was drooping and I had slurred speech, once stroke was ruled out I was told I had facial droopiness and to rest. Unfortuately it would always come back and I would head back to the emergency room, but because i was not suffering from any pain it put me low on the list of priority to be seen so usually after several hours of sitting I would get called in only to have my symptoms alliviated by then. I suffered from double vision, drooping eyelids, had trouble swallowing, and using my hands and legs.
Finlly after about month of trips to the er with various diagnoises I was fortunate enough to have a neurologist who was on the rotation that morning...he was in the room with me for less than ten minutes before telling me he was pretty sure I had MG but was goingto give me a tensilon test to confirm. I was given the tesilon which immediately allieviated all my symptoms within seconds of taking it and FINALLY I knew what the problem was. I was given prescriptions for Mestinon and referred to a dr. but as I said I had no insurance and had just lost my jo because of all the sick days I had taken or because I had to leave early because I could not do my job...and frankly, walking around looking like a stroke victim was probably not best for business. (I was a cashier at a dept store)
So no job, no money, I started a trip down the wrong road and landed myself in prison after being diagnoised only 5 months before. At the prison they paid for me to have a thymectomy done and after about three months later I have had no symptoms of MG. That was almost 4 years ago. I am on no medication luckily since although I am working now, thank goodness, I can not afford to see a dr, not that I even have one.
What scares me is that I dont know what to expect...will I be ok tommorrow, will it come back next week, will it never come back. I have been reading other peoples stories on here and it seems like there is no way of knowing. For some people thymectomies only allieviate the symptoms to a degree, some it does nothing, while others go into remission. For those of you who have had remission and no need of drugs after your thymectomies how ong has it been? I know it is different for everyone but I dont know I want to hear something good and believe it will work for me too. I am scared to start a relationship with someone I care deeply for because I dont know how long I will "be me" and if it gets truely worse I do not want to have to burden him with that.
Kaycie513 Kaycie513
2 Responses Apr 25, 2012

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You cant let life get in the way of living. I was diagnosed with MG when I was 14. I had the thymectomy and went into remission. 25 years later my symptoms decides to return although not nearly as bad as when I was a kid. None of us know what the future holds for us. Maybe they will find a cure. I have a 4 year old and a 1 year old. It can be tough keeping up with them at times. What I do know is that I couldn’t imagine life without my wife and kids. Sometime life throws you a curve. All we can do is roll with the punches. Good luck!

Sorry for the different username, but I couldnt get the site to remind me of what my original password was. After I had my Thymectomy done it was about six months or so before I no longer was losing my muscles I currently still have no problems with my muscles at all. I hold a full time job down and havent had to worry about losing my muscles since the thymectomy was sone. I am also no longer on any medication either. I couldnt remeber if I mentioned that or not.

Six months