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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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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. 09 - crisis, had four days IVIG and improved greatly and started on Prednisone ~ Feb. 09 - thymectomy (full sternotomy) ~ Mar. 09 - still on all meds including Prednisone 20 mg ~ May 09 - 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!!!! ![]() Last edited by rezmommy; 05-13-2009 at 12:03 PM. |
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