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
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Little bits about my life with MS
1 comments:
Wonderland. Woohoo!!
Mom XO
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