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  MonaJean (05/28/09)
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  fkatt45 (05/23/09)
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  fkatt45 (05/23/09)

  I just read your story and sounds like my Fred he was diagnosed with MG in 2005 at the age of 65, I just lost him in Jan he was 69 he went into a MG crisis, that' s what the Drs called it . We were in and out of the hospital for the last 4 years.his started out effecting his throat muscles, he couldn't swallow so they put a feeding tube in the stomach, he also got so febble he couldn't walk. And when he talked you couldn't understand him, we thought he was having a stroke, but after he was put in ST.West and started hundreds of test then the diagnoses came , they started with Plasmaphersis 5 of them,which wouldn't stop there. then on to Ivig's he was.put on Cellcept 1500mg a day,mestinon 60mg 4 to 6 a day prendisone went up to 60mg a day but he didn't start out that high, the Drs would try to get him down lower but always go back up to 60 a day, Then ivig's and Plasma phersis.again,after 6 months we got rid of the feeding tube he became his ole self again, but we had to remain on all of the meds and treatments he would never get off of those. , he also didn't have the thymus tumor, Only droopy eye when he would get tired are over do it. he was a strong man before this he ran his own constructon crew in bricking. Million dollar homes in Dallas Tex we also had been married 45yrs Dec 1st but spent that last one in the hospital in ICU he was the love of my life, my hero my best friend. Now I read the Daily Strenght and want to share my story with other MG people , he had some really good Drs at ST West Medical Univ.Dallas before he went into the MG crisis I know he tried to lower the priendsone his self I tried to tell him he wasn't ready and let the.Dr do that, and then one nite he got really weak and started shaking and I had to call the peramedics so for the next 2 months we were in the hospital. On a respirator he never could get strong enough to get off of it, I know this can be controlled by the meds and the good Drs we have now,We just have to take our time and do what they tell us, I'll always wonder if.Fred caused this by trying to lower the.prendisone his self. He always like telling people that the richest man in the world died with this disease,Onassis he died in 1975 he was 73 and The Drs told him there was no cure so they have come a long way and still trying to improve the treatments , I would love to follow your story and see how you are doing you have my blessing and do what ever your Drs tell you ,I'll keep you in my prayers.Hope I haven't said anything to upset you. GOD. BLESS You KAT