In my journal talking about my illness some of you seemed interested in reading updates on how I am doing. If you are confused
right now and have no clue as to what I am speaking of then you might want to read this journal entry before continuing on...
Soooooooooo, here I am with an update!
Since that journal entry things have been up and down with me. I had an opportunity to go to Johns Hopkins in Baltimore to be seen by a neurologist that specializes in Myasthenia Gravis. She did blood work and confirmed that I have generalized Myasthenia Gravis, which means that it affects my whole body, including my eyes. There is a type of MG that affects only the eyes. She instructed me to take the full dose of immunosuppressant meds. My local neurologist had me increasing it every three to four months. This doctor said that I should have had the full dose months ago. That's nice.
I started taking the full dose this week. I am already seeing some improvement. My body just feels different...it feels stronger. However, I do have episodes of weakness still and I do tire very quickly. I have started to walk in the house most of the time without any aide, but I do still use the wheelchair when going out. I am still not able to walk long distances without needing to rest. I feel that the double vision and blurriness has improved a little in my eyes. The one thing that worries me is that I've noticed that when I am super stressed, nervous and anxious (such as in a social situation) that my symptoms come out really bad. I don't know if that will always be, but I hope it improves. I'm a very shy person, so going out in general makes me like that and if my body freaks out because I'm anxious then I'm not sure what I am going to do.
I have now lost my job. My employer did not approve my medical leave extension request. This has gotten me down a bit recently and has sort of put me into funk over everything that I am dealing with. I really haven't had much motivation lately because of it. I have been trying to get myself to come out of it, and I think I am very slowly. Regardless of how I am feeling on the inside I am trying to keep a positive outlook on the outside.
So, that's about it for now. Hope you're enjoying your weekend!