Monday, September 17, 2012

Periodic Paralysis/Muscular Dystrophy Consult



A couple weeks ago, I went back to University of Mississippi Medical Center in Jackson to meet with the Muscular Dystrophy team. It was a long day, as we didn't travel up there the night before like we usually do. We decided to leave before dawn the day of. I arrived at appointment time, but it was noon before I saw a doctor. Pretty common, really, as it is always packed. Being the only MDA clinic in the state, it's a wonder the crowd isn't larger.

While I was waiting, the MDA advocates came in the room and introduced themselves. The turnover is apparently fairly high, and this is the third set of reps I've met since first going there not even a year and a half ago. They were super, super nice and responded to my questions and concerns as best as they could in the amount of time we had. I had no voice (still don't), which made the day more challenging, but I managed a whisper that most folks could understand.

Dr. W came in and we discussed my recent hospital event. She documented everything I told her, and while she had no solution to my esophageal/vocal cord episodes, she did decide to increase my potassium intake yet again to see if I improved any. She also let me know that my Vitamin D was low, and prescribed 50,000 units a week. It's aggravating that I wasn't told about this six months ago. They waited until my bi-annual evaluation to say "oh by the way" instead of calling me in March with a script. Six months! Incredible drop of the ball there, but I didn't fuss at anybody.

That's pretty much it. No further tests or ideas for improvement, just documentation and experimentation with the meds.

Next trip to Jackson is in November, when I will meet with Dr. F, the Nephrologist/Internal Medicine specialist, for new labs and a consultation.

In other news, I was given a wonderful gift recently...a rolling walker. I am obviously not happy that I need such a thing in my 30's, but it has made life easier and for that I am grateful.


Her name is Indy. Because she's indigo. It's also a play on the Indy 500, because I'm a dork who often finds myself singing "Go Speed Racer" in an attempt to make light of the situation.

Whatever keeps the 'ol sanity in tact, people.