Life After MG?
It has been about 4 years since I was initially diagnosed with myasthenia gravis (MG). And now, 3 years after my thymectomy surgery. All is well, and my neurologist thinks I have been in some sort of remission stage for quite some time now. Which is obviously fantastic news to hear.
I haven't had any symptoms for about 3 years, and I have been off of Mestinon for a little over a year now as well. My neurologist said I don't need to see him as often and I can cut back to annual appointments. Also, I don't need to physically come into the office anymore and I can just do telehealth visits.
I am thriving at my fast paced, physically demanding restaurant job, and just moved up to being a bartender. All of this is extremely exciting and it sounds like a success story, right? Of course it is. ...But what now?
Mixed feelings about remission
As much as it sounds like I can just move on with life, how do you move on from something that was so life-altering at one point in time? Even though I don't have symptoms anymore, I can't help but to have so many lingering thoughts, worries, and concerns. Is that ungrateful for me to say? Or is it normal to have such conflicting feelings?
I still get very worried about getting sick. I know that can be a normal concern for anyone, but getting sick with MG, even with just a head cold, poses a lot more risk. Not only can being sick exacerbate my symptoms, but it can also set me back with the progress I have made.
I think I will always be wondering if my symptoms will ever randomly come back for some reason or another. Could this be a temporary remission?" Is remission even real with MG? How often does remission really occur, and how can I fully trust this? I'm thinking of having children - will pregnancy bring out any symptoms? If I begin to have symptoms again, what will I do?
Where do I go from here?
I try to take things one day at a time and stay positive and grateful for my progress so I don't get consumed with all of these thoughts. That being said, it doesn't mean that these thoughts aren't there in the little corner of the back of my mind. It's a very strange and confusing feeling, because it's almost like anxious happiness. I have all these "what ifs," but I am almost happy that it is something I can look back on for now.
So, where do I go from here? I just recently got married 2 months ago. Last month, I celebrated my thirty-third birthday. All very exciting! Some new experiences are beginning and now with being in remission, I'd like to think the sky's the limit at this point. The future looks bright, but at the end of the day, I guess all I can do is take each moment as it comes.
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