Coping With Myasthenia Gravis

I am 54 years old, female and been sick now for over 20 years. Doctors through the years have diagnosed me with a lot of things….but not one ever mentioned the disease Myasthenia Gravis….until 2 months ago. I find it fascinating that no matter who I saw or how I described my symptoms…. no one picked up on it. So….needless to say I have been told to go on out and try to lead a normal life, which I tried to do, just ignoring the fact that my symptoms were getting worse. All the while…..I was just doing more hard than good.

Keep in mind this is no way a bashing session aimed at my doctors……its just astonishment that there are so many of them that have no idea what MG is or how to treat it. Thank God my symptoms this last flareup were clear and obvious. Drooping eyelids, crooked mouth and I lost my voice. I thought i was just worn down and needed to rest…..but things just got worse.

Finally I got in to see a neurologist who immediately knew what was wrong with me. I was put on Mestinon and sent to a specialist in Augusta Ga. He did single fiber EMG….and the other EMG which tests the muscles.

I am still awaiting the results and the doctors recommendation for treatment. I have been doing much research on this disease and find that surgery could be an option for me. I don’t tolerate meds very well at all…..and thats the primary reason why I would take full advantage of that option.

My friends and family are all shocked about this new development, for they all have been watching me through the years get progressively worse with no hope of understanding exactly what was wrong. If anything, whether I get better or worse, is just knowing what I have now. I thought at some point I was just losing my mind, or had some fixation on being sick with no real cause for my symptoms. But now, I feel set free. There is hope, and I can give up all the questions of why and how. Doesn’t matter what or why I have it……I just have it.

Coping…….I have developed many ways of coping through the years. Probably the most helpful was psychotherapy……then relaxation therapy, eating a healthy diet, and swimming everyday. Attitude and acceptance of the disease I believe kept me from getting worse early on. If you are tense, worried, angry, or blame yourself for all of this….it only makes life more difficult to get through. I find that giving to others even on my worst days, which usually consists of coaching other people online who suffer from chronic illnesses……really keeps me be more optimistic and more grateful. I choose each day to experience joy and peace and thank God for being with me and protecting…especially on my worst days.

Right now I don’t know what my outcome will be ultimately…..but it’s ok. It will become clear in time.