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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-07-2009, 12:30 PM
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Hello all!
 Just got off the phone with my neuro's office and he is setting up an appt for the MAYO clinic!  Yippee! I am soooooo excited! This is the best news I've heard in a while! I'm also having ANOTHER doppler done (I had 3 done in the hospital last time I was there), as well as gallons of lab work....my PCP and neuro are requesting every test known! Thank God for my port! AS most of you know, I've been having lots of pain and can no longer walk on my left leg and was dx'ed with piriformis but I had another "incident" last night where I dropped a pill on the ground - tried to get it up and rolled on my left side - it was AWFUL! I was in so much pain I couldn't move and was screaming my head off! It was really scary!  My mom has also done home health care work in the past and we are now pushing to have her help me out. She has been GREAT! This was she doesn't have to get up @ 4:00 and can drive me to my appt's since I can no longer drive! Plus, she will be able to get insurance and social security)My PCP is sending someone out to help with my PT - again due to the walking/driving thing and I am sooooo excited! My pred was pushed back up to 40 mgs for the time being - I've just been too weak to get anything done! I may be getting a Hover Round soon......I am so ready for one!   You know, I have been truly blessed to have such AMAZING doctors! They have really been taking care of me!MIke and I will be going to the Mayo in Phoenix and renting an aparmen there! It sounds nuts, but it will be like a 2nd honeymoon! How many of yo have gone to the Mayo? What did you think of it? Do you use a wheelchair/Hover Round for your MG? What do you think about it? If you did go to the Mayo, how long were you there? A month? Longer? This is an answer to prayer! Fnially some ANSWERS!I hope this post finds all of yo string a  nf happy!Love, Erin
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Erin . |
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Mayo clinic, here I come!
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