Saturday, April 24, 2010

Update on Mayo.........

First, foremost and always, thank you for the emails, calls and notes of concern. I am so grateful. Special thanks to the "sorority girls" on Friday night for the massive distraction (and the great wine). That was so much help! It was nice not to focus on all this for a few hours.

Ok now the update, I had two more days of testing and consults on Thursday and Friday.

Medical Genetics consult
Long MRI (3 hours)
Fasting bloodwork

Internal Medicine consult
More bloodwork
Nerve conduction test
EMG (muscle testing)

As a result of these more tests/consults are scheduled for May 12th and 21st.

At this point I have some pieces of the puzzle and some new findings that I didn't have from 15 years ago, but wont have a big picture of it all pulled together til my follow up with Dr. Cross (the neurologist) on May 12th. So I am going to hold off posting much of what I learned until I know how it all fits together and what it means going forward.

I know the big question everyone wants to know (from the calls and emails) is how I am doing. I am really ok. I am kind of neutral on it all. Once I got past Tuesday, which broadsided me, it got easier. As one friend pointed out, I think Tuesday was so hard because it was the first time in 15 years I have spent that much time and energy focusing on my physical imperfections. Having to tell people over and over again all that is "broken" in my body was really hard after a decade plus of hiding it.

Not being able to do a comparison of the old EMG vs the new was shocking, but has turned out to be a double edged sword overall. It would have been nice to have the comparison, since it was what started all this. But I am ok now that we can't do that. It definitely took the pressure off me of looking like a fool if it wasn't better. It made the entire focus, for me and my drs, about going forward instead of looking back, and that is probably the best approach any way.

I have to say before I end this post, the doctors and staff at Mayo Clinic, greatly impressed me this week. With the exception of one doctor (the medical geneticist) I was blown away by the level of detail, interest and focus the doctors had. How genuinely interested they were in finding out what is going on with my body. I am overall used to a medical system where doctors have seconds per client and are just assembly lining through appointments. Mayo is not like that, which is amazing for the 1000's of patients they treat a day. Every doctor spent between 1-4 hours with me, they listened, they probed, and most importantly they THOUGHT about what was being said. I never felt like they needed to prove how smart they were or how important they were because they were an MD. I never once felt like my weight was used as a reason not to find a real answer or that anything I said wasn't being heard.

I was also incredibly impressed with how all the doctors from different specialities all worked so seamlessly together. Again, no ego issues, no discounting of each others ideas. It felt like I had a team of professionals around me all with one goal, the same goal, finding an answer. It was really comforting and made this a very easy process overall.

I did have to laugh because as they were reading me each other's notes they all seemed to start with variations of "This is a fascinating situation" or "This is an incredibly interesting case". It made me laugh, I havent heard those words in 14 years. If it wasn't my body I would have to agree with them that what is going on (and what went on during that surgery) is an amazing puzzle!!!

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