Wednesday, December 14, 2011

in limbo

I am sorry that it has been so long since I have sent an update.  Between life, the holidays, and my scrambled brains...coordination has been difficult (pun intended.)  I went to the doctor this morning and finally have enough to share.

A month ago, I experienced a fairly significant increase in my symptoms (tremors, migraines, and convulsions.) Following a day of continuous movement, and I mean the involuntary type, I developed a headache that would not go away.  I awoke the next morning with continued pain.  After being awake a few hours, I suddenly lost the ability to move my left arm.  I began to drag my left leg a little as well.  This improved almost as quickly as it occurred and within a few days, I had regained full use. 

I notified my neurologist the following morning about the new symptom and of my concern.  I was assured that I just needed to increase my medication during those times.  I stressed that the increase made it impossible to stay awake, but my doctor's orders remained the same.  I have had three or four additional episodes that were less in severity but longer in duration.

I met with my immunologist today who agreed with my concern, but does not know of any new options.  He is considering putting me back on the Cell-Cept (immune suppressants) but wants to see my lab results and consult with my neurologist and immunologist first.  I have started taking Celebrex for the muscle and joint pain and I was asked to consider returning to the Mayo Clinic.  I will update when I have the results of the conference.  

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