A date with Neurology

Quick personal indulgence...I love you Bradie and Logan! Here is a picture of mommy doing fine! I will see you on Saturday. Be good and make me proud. Logan...keep your chin up and be strong. Bradie...I am so proud of the help you are giving Nonnie! Now you both quit reading The rest is for the adults!

We spent the day with our Neurologist, Dr. McKeon. He is a very serious little Irish man! At the end of the day, he feels fairly confident confirming the diagnosis of Hashimoto's Encephalopathy. When it comes to treatment or management...that is where it is going to get complicated. There are still a couple other neurological diseases that must be ruled out in order for us to follow the treatment plan. Unfortunately, these tests cannot be done while I am on steroids. I have been asked to come off of the steroids, allow a relapse to occur, and run the required tests. At that point, I could return to the steroids and add an immune suppressant drug.

Here are the points of concern: With a relapse, I run the risk of coma, stroke, or death. My doctor feels the risk is necessary. When the relapse occurs, I will have a set back that slows down my ultimate goal of living in remission. Once we are able to restart the steroids, the immune suppressant drugs will bring their own complications. I will be at a high risk for infections and increased chance for cancer. I will have to receive the drugs through IVIG which will mean going in for the intravenous treatment, then daily...weekly...monthly blood draws to monitor about a 1000 complications that can occur.

Here are some positives: I will be able to come off of the steroids gradually once on the immune suppressant drugs...we hope. After a few years of the immune suppressant drug, we can attempt to come off of these drugs. One great point is that this neurologist is comfortable with designing a plan, but allowing my local neurologist to manage...yet remaining on the case.

What we still do not know: I will meet with endocrinology, gastroenterology, and urology over the next couple of days. They will run their own tests. While we suspect that there are issues to address, we are praying that it will not be anything that will delay our new Care Plan. I would not be able to come off of the steroids or start immune suppressant drugs if surgery or aggressive treatment will be required. He also admits that we do not know what will happen long term. We have been informed that most of the studies that have been done are after the patient has died. There are very few...possibly only one, other case tracked through the treatment. We do not know anything about what the future will hold.

We have an MRI at 6:50am followed by more blood work tomorrow. We should know more about our schedule after 9am. We will keep you posted! Love you all.