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.
