Wednesday, June 23, 2010


Well, It's official. I'm going back to the Mayo Clinic. I have an appointment August 11th.

When I went to Mayo in late March of this year I saw an Autonomic Nervous System specialist who officially diagnosed me with POTS. She sent me home with a treatment plan of exercise, drinking lots of water daily, increased salt intake, and meds to control my symptoms. She said that with exercise and increased activity, over time, I would slowly get better.

I started exercising by riding a stationary bike when I returned home. I was supposed to increase my time on the bike slowly. However, I wasn't able to increase much at all. My legs just didn't want to do it. They were too weak/fatigued and sore. The more I tried to increase my time, the worse I felt. Plus, if I exercised, I wasn't able to do anything else that day. Eventually, I quit. I have, however, continued to increase my activity. I am always trying to do more things around the house (laundry, dishes, cleaning up, playing with my kids, etc.).

Many of my symptoms have remained the same, no better, no worse. There is one symptoms that has been getting worse. That is my muscle pain and weakness. I guess I shouldn't call it weakness... it's easy "fatigue-ability". My ANS specialist at Mayo reminded me multiple times that I didn't have weakness; that I just fatigue easily. The aching/pain is definitely getting worse. I have a lot of discomfort in my hips, upper thighs and glutes. The more I do (even just walking), the worse it gets. When it's really bad, I almost walk with a waddle. I also have the same problem in my upper arms and shoulders but it's not as severe.

Both my cardiologist here in town and the one at Mayo have said at one point in time or another that they think something neuromuscular might be going on in addition to the POTS. My cardiologist here in town has been trying to get me to see a neuromuscular specialist since I returned from Mayo. However, I wanted to see if this treatment plan worked first.

Therefore, I am seeing a neuromuscular specialist at Mayonaise on August 11th and it can't come soon enough! Hopefully I won't be in a wheelchair by then!

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