Back in the hospital

If you have been following the last couple of weeks, you know that I have had a decline in my health. The tremors and convulsions were coming more often, and my heart began to flutter strong enough that it took my breath away.

I met a new neurologist last week and he was skeptical of my diagnosis and truly against the common treatment for my illness. I was uncomfortable with the way that he just wanted to take a few weeks to review my charts and previous labs, while I felt a progression occurring. I scheduled a follow-up appointment with my endocrinologist to get her feedback on the matter.

Upon walking into her office, she immediately pointed out that there was a significant decline in my condition from our visit just two weeks prior. She was not comfortable allowing my condition to decrease any further, so she admitted me to Stone Oak Methodist. This has to be the quietest hospital I have ever been.

We performed an EEG, EKG, MRI and many labs. Many of the labs will not be back for a couple of weeks. The other tests showed only minor changes. Our new neurologist came in late Monday night and explained that he had been talking with my endocrinologist, rheumotologist, and other neurologist. While he is still not convinced it is Encephalopathy, he has not been able to find any other disease that matches my symptoms. He has decided to treat me for Encephalopathy, but not follow the typical treatment plan.

"Steroids have bleached your bones, began to destroy the bones in your hip, gave you diabetes, and will eventually re-open your stomach ulcers," said Restrepo in an encouraging manner. "I studied at the Mayo and 20 out of 22 cases I saw were progressive. There is not a therapeutic dose of steroids that would work. You will be on very high levels for the rest of your life. You will probably die from the side effects before the disease."

So we have come up with another plan. Instead of treating what we feel is causing the disease, we are going to use less toxic meds to treat the symptoms. This should stop the convulsions and possibly allow me to return to my usual lifestyle, while they continue to look for a cause and cure. I am not driving for a couple of weeks, but we will change meds in a couple of weeks and see if it is possible. That is when we will learn if the symptoms will return.

I also received a phone call from my OB last Friday to tell me that they found abnormal cells and want to do biopsies. However, at this point, we will wait for me to be more stable and my immune system to be stronger.