Hahaha Annie. Yes, I set my alarm for this morning, but was unable to jump to the keyboard to share my story with my anxious readers. P.I.D. was in half force. I haven't encountered P.I.D. for a few weeks, so I was cool to oblige when it said..."stay in bed".
Jason and I left yesterday's appointment with the MS doctor feeling quite satisfied. We were the last patient of the day, and there weren't any other doctor's there with patients either. Dr. Not-So-Nice was thorough, attentive, generous with time, and patient. In my three previous visits with him, I don't think that I have used any of those words upon leaving.
Although he remains concerned about my liver enzymes, his mind was "put at ease" by the hepatologist. My enzymes fluctuate. I will continue to go for monthly blood tests, and keep taking my 22 mcg dose of Rebif (as opposed to bumping it up to 44mcg).
Dr. Not-So-Bad had a check-list of questions to ask me, and when he finished his list, he asked me if I had any questions. Since fatigue was not touched upon, I asked him if there was anything to help me through the rough fatigue days. I can accept that I can have two or three stellar days, and then maybe have two exhausted days, but when the exhaustion lasts for three or four, I get upset.
Fatigue is one of the more difficult things to treat. When I suggested that maybe I should be more disciplined on my stellar days, he said that unfortunately, fatigue is not predictable. Maybe having a nap everyday, despite how I feel, will help, but ultimately, MS does not play by any set rules. He has given me a drug to try as needed (amantadine) as he also seems to respect my desire to stay off daily medications as long as I can.
Throughout the course of our appointment, he did say a lot of "We don't know"s. However, he said it with a saddened certainty...a tone that I respected. It is as if he understands my concerns, and they are concerns that he shares with me...with neither of us holding the solutions.
So I don't need to see him again for another year. No MRI's. Maybe more swallowing follow-up...but it finally feels as if we can just ride the ride.
Emily
yesterday with Dr
Posted in liver enzymes, P.I.D., Rebif on Tuesday, July 8, 2008 Tuesday, July 08, 2008 by Emms
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Little bits about my life with MS
1 comments:
Wonderland. Woohoo!!
Mom XO
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