About two weeks ago, our family began a journey we never wanted to take. Our daughter Jackie called me to tell me she was having difficulty writing her name. Needless to say, we were both concerned. The symptoms progressed to weakness and heaviness in both her right leg, foot, arm and hand with an accompanying lack of control and sensitivity. She was functioning, but not normally. We prayed and tried to figure out a course of action.
She went to the on-campus health services at the university where she works, and the next day (with symptoms no better and perhaps worse), we determined that it was time to get to the emergency room. At the emergency room they did routine tests and a CT scan. Through those tests they ruled out some big items including stroke and brain aneurysm. They then referred her to a local neurologist with the concern that it might be multiple sclerosis. This was on a Friday.
The next week was spent trying to get records transferred from the ER to the doctor. it was a bit of a frustrating process and an anxiety-filled process of waiting to get an appointment. When she finally succeeded in getting the appointment, it was going to be two weeks away. We all understood that doctors were busy and that Jackie’s symptoms did not appear to be life-threatening, but I had to fight the urge to drive to Birmingham and plead my case before the receptionist at the doctor’s office!
During all this time, we kept the circle small of those who knew the details. We did not do this because we were fearful or didn’t want the prayers. Speaking for myself, I was processing what was going on and simply needed a little space. This need for a little space has helped me to more fully understand when I discover that a church member has not told me of some health issue they’re facing. it’s not that they don’t want prayer; they just need some time.
As Nancy and I prayed about the situation and shuffled through the possibilities and their consequences, she had a brilliant idea – one which I wish we had thought of from the start. She encouraged Jackie to ask in her church to see if anyone knew of another neurologist or had influence with the neurologist with whom she had her scheduled appointment. Things then kicked into high gear.
Her pastor talked to a neurologist who was in their church. An appointment was set up for the next day. Jackie went in to be examined, and an MRI was scheduled for that afternoon. We made plans to head for Birmingham that afternoon to be with her and go to her next appointment. That afternoon she received a call to say that the doctor would see her at 9am the next day.
At this point, let me add a few comments. First, I am so proud of our daughter for the courage she has shown through this whole scary process. Second, I am grateful to Dr. Kyle Hudgens for being there and for caring for her and us during the process. Third, I am once again blown away by the love shown by her church family and Christian friends – if any of you ever wonder why you should be vitally connected to a church… this is one BIG reason why.
The appointment with Dr. Hudgens added new words to our vocabulary: Tumefactive Multiple Sclerosis. He said there was an 80% chance that this was the correct diagnosis with an outside chance that it might be some other kind of tumor. He answered our questions, gave us encouragement, and scheduled for Jackie to check into the hospital that afternoon for a lumbar puncture and to begin heavy doses of IV steroids. The LP should give a more definitive diagnosis and the steroids should reduce swelling of the lesion and prevent new lesions from occurring.
This is a rare type of MS. Here is just one website if you want to study up: http://www.healthline.com/health/multiple-sclerosis/tumefactive-multiple-sclerosis#MSBasics1 If this is indeed what she has, then there is treatment, and she should live a full, productive life with few encumbrances, though she’ll be taking medication.
She is getting out of the hospital today and heading back to her apartment. We’ll stay at least another day to get her settled back in. She should meet with Dr. Hudgens again on Tuesday for the LP results and to determine her treatment regimen.
We are grateful for our families who are supporting us. We thank all of you who are concerned and praying. Your prayers sustain us when we are weak. We’re doing okay – redefining normal. God’s grace is sufficient, and I pray He will use Jackie in ways that she could never have been used before to bless others and glorify Him.
Thank you to my Grace Fellowship church family who are filling in the gaps for us now. We know we are loved, and we love you.
One thought on “Learning New Words You’d Rather Not Learn”
Our prayers are with you Pastor.