Hello sweet friends! It has been a very busy couple of weeks, so I will try to fill you in, catch you up, without bogging you down. I think I verbally regurgitated all over my last post.
For the last month, I have been experiencing an increase in my neurological deficits. When I am startled or experience strong emotions, my body is under such stress that the brain isn't able to send messages through the nerves correctly. I experience sudden loss of strength, motor skills, and begin to have convulsions. It only takes about an hour for my body to recover if I am able to lady down in a cool, quiet place with limited stimulation. Just driving in the rain a couple of weeks ago was enough to trigger an episode while at my rheumatologists office. They ran blood work and we were waiting for results.
Within 24 hours of my last post where I boasted about my ability to remain healthy while on my immune suppressants, I developed a fever. I must have come down with the virus my daughter had the week before. I had a sore throat and began to cough. I was ordered to stop taking the immune suppressants and began taking an antibiotic with hopes of preventing a secondary infection (sinus infection or pneumonia). We were all very concerned because I would not be taking any medication for my auto-immune disease. After a great deal of prayer and a few nervous days, the fever broke and I was able to resume my medication. I experienced few complications from being of the suppressants. This gives me hope that one day I will be able to quit taking the suppressants permanently. I feel it is important to celebrate the little miracles like that we are given and not spend so much time trying to see what the future is going to hold.
I met with my endocrinologist today. She is my biggest cheerleader. She told me that she is happy to see I have lost the weight from the steroids. I told her I had lost more hair than weight, but it has allowed my to wear some great hats! We looked at my recent labs and compared them to the thousands of others I have had in the past. We are going to increase my thyroid hormone and need to begin taking B-12. My low B-12 could explain some of the neurological progression. We are also hoping it will improve my energy level. On the positive side, she told my that she is not ready to give up hope that we can turn the progression around. She insists that she will not accept this as a progressive disease and will not accept death as my ultimate fate. "There just are not enough cases to write you off yet and say that is the way it has to be," she demanded. "You are too young and I think you are going to surprise them," she added. She agrees that I am on a down hill slide, but thinks we can reverse this...but made a suggestion I refused. "You may have to go back on the steroids for a couple of months to turn this around," she said. I told her I am not ready to do that, and do not plan to be ready for that as long as I am the one making the decisions. She wants me to be hyper-vigilant in recognizing the signs of stress or fatigue and rest as much as possible. I will meet with a new Neurologist on Sept. 30 to see if he has any other suggestions.
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