I just wanted to let everyone know that I have been to the lowest of lows with Myathenia Gravis. I have cried because I could not lift my children. I have been embarassed because people would stare at my droopy eyelids. In January I could not swallow and was having a lot of difficulty breathing. My first crisis experience and it scared the hell out of me.
Here is a brief outline of what has brought me to where I am today.
~ Aug. 07 - symptoms first appeared with limb weakness
~ Jan. 08 - right eyelid starts drooping
~ May 08 - left eyelid starts drooping
~ July 08 - neck weakness & shortness of breath
~ Oct. 08 - difficulty swallowing, extreme overall weakness, fatigue
~ Nov. 08 - diagnosed with generalized MG on the basis of single fiber EMG,
response to Mestinon and neurological exam
~ Nov. 08 - started on Mestinon 60 mg 5x/day and Azathioprine 100 mg
~ Dec. 08 - eyelids and walking improved but the swallowing and breathing
were still problematic
~ Jan. 08 - crisis, had four days IVIG and improved greatly and started on
Prednisone
~ Feb. 08 - thymectomy (full sternotomy)
~ Mar. 08 - still on all meds including Prednisone 20 mg
~ May 08 - Prednisone is now down to 10 mg and Azathioprine is still at 100
mg. I have not taken Mestinon for a week now.
I don't know how long this good feeling is going to last but I definitely intend to ENJOY it! My weakness is not completely gone but I feel stronger than I have felt in a long time. My weakness remains the same throughout the day even though I am starting to live my life more actively. I don't know if it is the surgery, the meds or what but I am defintiely thankful.
I just wanted to let you know that it CAN get better. You are all wonderful people with hearts of gold!!!!
