ALS Diary May 24, 2015
Today Susie and I are packing to go back up to Mayo for testing. I am scheduled to do another EMG test on Tuesday morning at 8:00 am. This is the third time that I have taken the test. I woke this morning and yesterday morning anxious and depressed knowing what the test entails. The test is long and painful, and it’s always uncertain what they might find. Last time they found a problem with the ulnar nerve, and hopefully the test results remain the same.
Susie and I will be meeting with the neuro surgeon and my neurologist to talk about the options with my arm. We are not sure what they might recommend, but we are both concerned that they are focusing only on this one area without taking into consideration the totality of the symptoms. This is a common trait with doctors, and we both want to make sure that we take time to consider all of my options and symptoms.
The other treatment that is available is called IVIG, the link is belong if you are interested in the medical details. (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin)
Work has been extraordinarily stressful over the last week and it has exacerbated my symptoms, especially in the evening and during the night. I am very fatigued at the moment and during the weekend I have very little energy to do anything. Susie has been wonderful letting just veg on the couch.
Home is a sanctuary for me; I am reluctant to go out unless we have something planned. Home is where I can restore, relax and recover.
I wanted to tell you how grateful for everyone’s kind words and positive thoughts. I feel supported loved. I am grateful for my health. The trick for me is to stay in the present moment, and to take this process one day at a time.