May 2009

After my trip to Mayo Clinic in April I was feeling pretty discouraged about everything. I thought we would finally get some definite answers about what was going on with my health. Apparently not. I was just to keep seeing my doctors, and keep on with my previous health plan. Finish chemo. Take meds. Live life as much as I could. The treatments were getting easier, but having so many treatments and meds and seeing such little improvement is very frustrating. I figured I was at least stable at that point and tried to start living my life again.

In mid May I started having some problems with balance, but didn't think too much of it. I am pretty clumsy. Then Cheston and I went to Melissa and Andy's house for dinner and I started feeling really bad. The next day it was obvious something was extremely wrong. Along with balance problems I had vision problems, trouble swallowing, the right side of my face was slack, almost like I had a stroke. I could not touch my nose with my finger or perform simple neurological tests. I was taken to the ED, again, and another MRI was done. I had another brain lesion and I was immediately admitted to the hospital for extended testing. The doctors thought they may be able to find something while I had an active brain lesion.

Of course I saw all of my "normal" doctors, but I also was to see THE leading neurologist in MS (multiple sclerosis). The doctors wanted to explore other options for my problems other than what we figured was already going on. Everyone, including my doctors, were getting very frustrated that I was always so sick and miserable. I was, and am, fortunate enough to have doctors that treat me as if I am their own. (That may come with my age or all the health problems I have had at my age. Not sure. Or maybe they happen to all be that compassionate.)After many tests including another spinal tap, dopplers for blood clots, scans, brain function tests and being hooked up to machines that tested my responses to stimuli Dr. J. thought he may have found something. My knee and thigh were also still bothering me, so that too was being checked out.

I was on mega doses of steroids once again, as well as other meds to get the brain lesion under control. There were also many problems accessing my veins, nothing new. I let a lot of students practice putting in IVs. I was bored, what can I say?

About mid was through my stay Dr. J., my neurologist, confirmed he felt I had MS. Apparently the synapses were not connecting like they should in my brain, and were causing the problems with motor functions. I said he "felt" I had MS because there is NO definite test to confirm it. It is a diagnosis made by considering all the contributing factors, and ruling out other diagnosis that CAN be proved. Now, why not do a biopsy, right? That was one of my first questions. The spot where my lesions are is such a small area (the brain stem) that no one will even consider going anywhere near it unless it is life or death. I tend to agree with this. I am willing to risk not knowing to losing fine motor skills. After he told us what he thought was going on he said he wanted to run a few more tests before I left the hospital to confirm what he thought was going on. I was to hear these results at my first doctor appointment with him after being released from the hospital.

So, I was coming to grips with the idea of having MS, I started doing some research and I started preparing myself and my family for this idea and for what life would mean for me in the present and future. We were hopeful because we were told there were many breakthroughs happening in the MS field. I was scared about the thought of being in a wheelchair at an early age and not being able to work and possibly have children. Not having children is still something that stays on my mind and lays heavy on my heart. I was very upset about it, and it wasn't something I wanted to share with anyone at the time. It was too much to process and explain. The thought of having to answer so many question from people was overwhelming.

On this visit I was asked by a doctor to present my case to a class of interns and a panel of other doctors. I spent one afternoon, in my hospital garb, no shower, barely walking and barely talking clearly presenting my case to about 40 interns. They were to use my information and ask questions to learn more info, learn how to question a patient, etc. This was not the first time I had dealt with interns wanting to use me for case study or a regular doctor wanting to use my case to teach. At that point I figured the more eyes on my medical history the better off I would be. Unfortunately nothing was ever found that we didn't already know.

I had a few visitors besides my family, but as I started feeling better I obviously started getting bored. At that point I was to walk around the halls as much as I could in oreder to get strength back. My Dad walked with me a lot so he could help me if needed. As it turned out I did need him one night. We were walking and my ankle turned. I hurt my knee and caused the pain in my leg to become worse. At this point we also had a family vacation planned, which I was greatly looking forward to. I was so ready to get out of town for a few days, simply because I was tired of being in the hospital and even in Winston. I felt like if I could get away maybe I could get away from my health issues for awhile.