Char52's Journal

It's amazing how good I feel. My mood is no longer dark and dreary, my energy level is climbing back up to normal and I can actually hear two sentences together again without saying, "Huh?"

Last month, in the midst of frustration, I told the MS Center that I was totally discouraged and felt that Rebif either wasn't working or making me worse. Since then, I was put on steroids for three days, had a swallowing test at the physical therapist, had an eye exam, spoken with a nutritionist and am scheduled for another MRI to determine whether there are more lesions and a pysch evaluation to determine the cognitive issues at hand.

Results so far?

The dietician sees no reason why I'm gaining weight. I eat well and healthy. She did suggest portion control and show me the appropriate amounts that are in a portion. I found that helpful but not that different from what I'm eating. (with the exception of my Breyer's Natural Vanilla Ice cream...that's the only one I eat and is my evening treat)

The swallowing test determined that I need to be sure not to multi-task at all while I'm eating or drinking anything. She also suggested that I am extremely careful with "mixed" foods. This would be soups or things like fruit cocktail where there is both juice and solids. One other thing she mentioned that I never thought of...make sure your head is down or level when you swallow. If you are looking up, or tilting your head up, you have created a straight line between your mouth and your windpipe. Now, THAT, I didn't know.

The MRI is an about time thing. Before I went on Rebif, I would have a relapse and then get right back to where I was, like nothing at all was wrong. Since the Rebif one year ago, I have had two major relapses and several minor. The first relapse put me in the scare mode of facing a wheelchair. I never truly recovered from that one. The second was this past February where it hit me more cognitively than physically. If I'm slowed down physically, I can still get around via a cane or wheelchair. If I can't think, or understand what's being said or written...then I'm sunk. The depression hit massively both times. Sooo, we're doing the MRI and re-evaluating my meds.

The psych eval was my idea and I have wondered why they never suggested it. If they are to determine the damage MS does to me cognitvely, then we need a benchmark test to see the progress or deterioration. It just makes sense. I wish we had done it a year ago but se la vie.

At any rate, I really do feel better now. The steriods did not seem to work at first but they have slowly, over time, put this thing back into the background of my life, rather than a minute by minute struggle. Am I the way I was a year ago? No, by no means. Is it better than a month ago? Definitely.