Test Results and Another Seizure

Test Results and Another Seizure

Today will be written by guest writer, Maureen. Excuse the difference in style and potential grammatical inaccuracies.

Last Thursday evening, Greg's birthday, we finally received the long-awaited test results from the Mayo Clinic that would confirm or reject him having Autoimmune Epilepsy. (This is only based on the autoimmune biomarkers they have at this point. There have been new biomarkers discovered since we last tested in February. This is a rapidly changing field. Therefore, Greg still COULD have autoimmune epilepsy, but at this point it cannot be confirmed.) We were praying that it would be positive to give us a "better" treatment option. The negative results were hard for me (Maureen) to hear, but Greg, as always keeps a level head about it. We are not sure what our neurologist will want to do from here. At our last appointment with him in August he said that even if the tests were negative, there would still be options for us.

Last night, after 6 weeks of being seizure free, Greg had a seizure. This one was significant for a few reasons. First, it confirms that the medicine has been helping, but is not our long term solution to being seizure-free. Second, Greg was alone on a walk. As all of his prior seizures have been asleep, or much later in the evening (after 9:00pm), we have been cautious but felt comfortable with Greg doing things independently during the day. He has taken a few walks a week on the trail by our apartment, and at only a mile, we've been comfortable with that. However, yesterday, as he was returning from his walk, he started to feel funny (his "aura") and he laid down on the grass. Thankfully, people driving by stopped to help him, saw his Medical ID bracelet and my number, called EMS and myself. I am so thankful. I do not know who these angels were, but they were angels.  Thank you. I'm sure at first glance it looked like he was doing odd stretches in the grass, but they checked, thank you. It gives me hope in our society. When people are in such a hurry, and often distracted by their lives, it can be easy to pass by, assume everything is okay or think someone else will stop. Thank you. (Sorry for the Maureen comments here).

We went to the ER, as our normal precaution. He was stable and did not have any other seizures. He did re-injured his shoulder. We were released and upon returning home realized that our AC was broken. We are thankful for endless support around and have been staying with a friend, bless you!

We do not have answers at this point. We will be speaking with our neurologist later this week. At this point our next trip to STL is next week with a CT can and a followup with our oncologist.
We are so grateful for the prayers, the support and all of outreach. It is hard to know what we need at certain times, but prayer is always needed!

God is always with us. We may not understand the reason for our journey but He is with us through all of those around us and in many little blessed ways.