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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Back from the Mayo!
Hello all!
Just returned from the Mayo in Minn. - Phoenix would not take my ins. - and it was GREAT!
I was tested from head to toe. I was a guinea pig and loved every minute of it! My neuro looked like Doogie Howser (about 12 yrs old) but was very thorough. He DID say that my neuro did everything he would have done, but my case was one of the most complicated he'd ever seen.
Everyone agreed that at this point the pred is doing more harm than good. My bones are like chalk. My blood pressure is through the roof. I am waaaaay overweight. I was told point blank that they(the roids) are literally killing me @ this point.
They discovered that my ribs and pelvis are broken as well now. 
The ortho that I saw wanted to put a pin in my femur but said it was too risky @ this point, so I need to find a great one here in SA.
The Mayo was amazing! I would have one or two appts set up and then they would add 5-10 more but I never had to wait more than 10 min for anything.
They were also very warm and caring.
I saw so many doctors that it started to become a blur, but am so glad that I
was blessed enough to go! Mike and I thought of it as another honeymoon! No kids or dogs!
The pred has also atrophied my shoulders and thighs so I need to start GENTLY working on my arms, but nothing for my legs right now. I was given the dubious honor of "china doll" by the ortho who told me not to go anywhere without my walker for fear of a HUGE break in my femur - right now it is a hairline fracture throughout - and permanent damage. I'm also NOT to carry anything for a while - 6 months to be exact.
The endo said my thyroid is a bit low but nothing to be concerned about. I wore that finger thing to check for sleep apnea - all clear there. 10 vials of blood were drawn - all clear. BAG all good. Neuro said that @ this point my MG seems to be OK but the pred HAS TO GO! No if's, and's or but's!
I don't know what to do about that as I have been told that I am more roid dependent than the average person, but it simply has to be taken care of.
I've also decided to get another neuro. I love the one I have right now, but he really blew me off when I told him how much I hurt. I can't keep waddling around with a broken hip/pelvis and have him tell me to take a tylenol. The Mayo dr thought that was simply crazy and gave me some morphine to combat the pain. It has helped, but with this many broken bones it only takes the edge off - I am thankful for that!
My new neuro called and checked on me and LEFT HER CELL NUMBER! She also had flowers delivered to my hotel room and a gift package for my trip. It was wild! She is a research doctor who works only a few minutes from my home and is able to get IV IG by the boatload - at a greatly reduced cost - so I will be able to go in, have my IV IG therapy and drive home! YIPPEE!
All in all, I HIGHLY recommend the Mayo in Minn! It was flippin cold, but the drs and staff were amazing! They gave me such hope! I've been a bit down recently with all of the pain but am once again seing the light @ the end of the tunnel!
Sorry for the super long post!
I hope this finds all of you strong and HAPPY!
Love,
Erin
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Erin
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