Tuesday, December 7, 2010

Moving right along

Chris and I drove to Atlanta, GA yesterday.  It was a long drive, 12 hours, but actually went by fairly quickly.  I got an audiobook from the library and we listened to that most of the way.  I appreciate the recommendation from my step-mom.  I also enjoyed the time alone with my husband.  I am still enjoying that, in fact. 

This morning I had two appointments.  My first appointment was a combination of multiple pulmonary function tests and an exercise stress test.  Immediately following that was my appointment with Dr. Shoffner.

I will discuss the good stuff first.  :o)  My appointment with Dr. Shoffner was excellent.  He is a very nice guy.  The greatest thing of all happened...  A doctor validated my feelings that something else, other than POTS, is going on.  He had basically memorized my chart and all of the test results I had sent him.  I mean, he obviously didn't know the exact lab values, etc, but he knew what tests I had had done and whether they were positive or negative.  He had obviously spent plenty of time reviewing my chart. 

Dr. Shoffner said that he was pretty sure that I have a neuro-metabolic disorder.  He thinks that POTS is just a part of that.  The symptoms I've been experiencing lead him to believe that he will find something in my muscle biopsy tomorrow.  There are numerous neurometabolic disorders that he will be checking for, including, but not limited to, disorders involving fatty acid oxidation, glycolosis, and mitochondrial myopathies.  He said there is a very small chance that it's auto-immune, but he will check for that as well.

My physical exams have been normal every time I've seen a doctor.  Dr. Shoffner stated that that is normal for the disorders/diseases he thinks I may have.  Many doctors rely on the physical exam to determine the level of muscle weakness.  As he stated, you have to have a significant amount of muscle weakness before it is visible on exam.  He did say, however, that he noticed a very small amount of weakness in my arms in the exam.  I told him that it may be more noticeable because I had just done the exercise test and I was very fatigued.

My exercise tests were the biggest clue that something, other than pots, is wrong.  The fact that my VO2 max was so low is indicative of a neurometabolic disorder.  He said that with my history of cardiovascular exercise, my previous exercise stress tests would not have been as bad as they were, even with pots.  That, and the amount of fatigue I experience after little activity, are the two biggest clues to him that I have a neurometabolic disorder of some type.  I asked him if he thought, prior to seeing the results of my muscle biopsy, that I have something other than just pots.  He said that he would not have let me travel to Atlanta if he didn't think I had a neurometabolic disorder.

Tomorrow I will have a muscle biopsy.  It will be under a local anesthetic and it will come from my upper thigh.  Dr. Shoffner stated that it will take approximately 6-8 weeks to get the results.  He will send the results to me as well as the neurologist who recommended the muscle biopsy.  At that time, I will make another appt. with him to discuss the results, prognosis, treatment options, etc.

The bad part of the day was the exercise stress test (my third one) and pulmonary function tests.  It took an hour and a half to do all of the tests.  I couldn't eat before the tests.  This made it ten times worse.  Since I had to be there at 9am and I couldn't eat for 3 hours prior, I couldn't eat breakfast.  I hadn't eaten since dinner the night before.  I had to do almost 30 different breathing tests.  After that I had to ride a stationary bike for 15 minutes.  It was tough, but I pushed through it.  My legs felt like jello when I was done, still do.

After the appointment with the doctor, we immediately came back to the hotel room.  I have been laying in bed ever since.  It's going to take me awhile to recover.  On that note, I'm having trouble concentrating, I don't have the energy to type, and my head is killing me.  Until next time...

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