Mayo Day 5 – Answers, Questions, and Heading Home

Posted on January 28, 2014

Done. Relieved. Scared. Confused. Excited. Got some answers. Have more questions. Have new questions. I’m Coming Home. Leaving Rochester. Feeling good.

And that’s not to say it was all sunshine and rainbows. It wasn’t. How could it be? It wasn’t as I expected. Had I known what to expect, I probably wouldn’t have needed The Mayo. So if you’re wondering what happened… feel free to read on.


After spending the whole weekend by myself, reading, doing puzzles, drawing Mayo Clinic Mayonnaise jars, and letting the fear creep in… results day rolled around.


(missing pieces… not ironic at all)

Day five consisted of a few final appointments, a lot of waiting, and I finally met with MayoNeuro. There was a lot of fear going into this appointment that it would result in another CIDPocalypse. MayoNeuro ended up being wonderful and thoughtful. When I had a question about the alignment of my eyes, she walked me to the mirror and demonstrated how to figure the alignment. When we discussed the possibilities of Chronic Fatigue, she addressed my worries.

You see, Chronic Fatigue is not a tactile disorder. There is no test for it. The only way to measure or quantify it is through the self expression of the sufferer. Having something that exists solely in my experience makes me feel shame. I can’t show it to you. You can observe it in my actions. But I can’t prove it. And that drives me nuts. Anyway… besides discussing the possibility of Chronic Fatigue, I learned a few other things as well.

I learned I have Asthma. This has been so exciting for me. The relief of the inhaler is immediate (one must understand that symptoms of Neuromuscular Disorders rarely come with immediate relief). Furthermore, we have been able to separate my Asthma related breathing problems from my Neuromuscular related breathing problems, and I now have a plan of action. I’ll be using the inhaler and seeing a Physical Therapist a few times a week who specializes in chest weakness.

I also learned some new specific information about my vision issues. While I don’t have the scary outlook that comes with a Supranuclear Gaze Palsy, my vision replicates this disorder in many ways. I made the mistake of Googling it and thought I was dying (that wasn’t fun). But my MRI is fine and I’m sure I’ll learn more in the future. I’m just done digging for the time being. NO. MORE. TESTS.


But the strangest, and most wonderful finding was that my EMG improved for the first time in two years. This could be happening for two reasons. Either the Steroid treatment is working, or my body is finally sick of attacking itself. I personally feel that this positive result must mean the steroids are working. I’ve only been on the Steroids for a few months. And my last EMG was right before I started them. It just seems so logical. But MayoNeuro isn’t totally sold and thinks we could test this by halting the ‘roids. I, on the other hand, am suddenly embracing my inner A-Rod and wanna pop those pills like Tic Tacs.

I’ve learned that one thing always leads to another, so I now find myself in uncharted territory. My EMGs now show more strength and better mobility than my gait would imply. Apparently this is something that frequently happens when there is nerve and/or muscle trauma. The Mayo Clinic has a Movement Disorder program called the BeST program. It’s one week, it’s intensive, and it has an 80% success rate. It’s the only one in the country. You go in and you retrain your body to walk normally and 80% of the time you leave walking normally (they kill the other 20%). I was told repeatedly that I would be a great fit for this. And I’m strongly considering it. Strongly considering it. But I’m not making any decisions until I speak with SuperNeuro. Message to SuperNeuro: You better prepare. I’m making lists. Lists and lists of questions. Binders full of questions.

I would sum up today by saying that I was heading home and I thought to myself, what if I had the opportunity to change my blog to ‘The Girl who once had a Purple Cane’?

Wifey, I found our next puzzle!

Thank you everyone. There’s been so much support. You have read my ramblings. You have even laughed… with me, not at me. I’m one lucky girl (with a purple cane). Thank you.

So what happened on Day 4?

What Others Are Saying

  1. Carrie February 28, 2014 at 8:34 pm

    Again, so glad you shared your experience!

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