My MS doctor has been closely monitoring me while I am on Rebif. If you remember, I went from weekly blood tests, to now monthly blood tests. He wants to keep a close eye on my liver enzymes, which, if I haven't mentioned yet, are currently normal. He takes his monitoring quite seriously: I only ever receive 8 weeks of Rebif per refill. He also calls me...himself...to let me know what levels are out of the normal range.
This means that every two months, my pharmacy has to request a renewal from the MS Clinic. In turn, this means that I have to keep a close eye on my supply, and any refills that I have, and make my request to my pharmacy in good time, in order for them to hear back from the Clinic.
Before I left for Ontario (which was on October 30) I called my pharmacy, and requested that they request a renewal. On Tuesday of this week, I called the pharmacy and ordered a month of Rebif.
Are you still with me?
Yesterday, my pharmacy called me to let me know that the Clinic would not renew my Rebif. I know that I have exactly 2 needles left, and this is no time for games! Apparently, Dr.E (my MS doc) wants to see me before he gives me more Rebif. A quick call to the Clinic gets me set up for a visit with Dr. E this coming Monday.
I know exactly what is coming. In our last conversation, Dr E. said that he wants me to consider stopping the Rebif. I'm not exactly sure what he is basing this on. My liver enzymes have been coming in normal for the past two months, and the hepatologist isn't concerned.
What is high, are my platelets...and my lipase...oh, and my hemoglobin is low.
This has been since my "Summer 08 Trauma...Appy-Gate".
I'm going to ask Dr E to leave me on the Rebif while my other medical issues get sorted out. (which is now going to be in December, as my colonoscopy was rescheduled). I'm also going to ask for an MRI. I haven't had one since April 07, and I'm curious. On the outside, it looks like the Rebif is working for me...but what about inside? I'm a prime example of the lack of correlation between the presence of lesions and the visible presence of disease.
I feel the need to repeat some past whining...just let me be!!! Why can't I have a month of no doctors? Why does someone always make me think about this disease?
I'm not sad about this...I'm frustrated!
Can I back up for a minute...
I am assuming the Rebif is working for me. I base this assumption on the following: I don't have any new symptoms. I think that just because I have moments of dancing around the house, that it is working. But I know better than that. If you are one of the lucky few to have a had a conversation with me lately, you would know that my brain is struggling. Also, I'm not wobble-less and I'm not a bundle of energy (adrenalin yes, energy...no).
Maybe I shouldn't be so quick to defend the Rebif. It just feels like the right thing to do because I don't want to go back on the Copaxone, as Dr E has suggested.
**Head on Emily...head on. This is no time to put your head in the sand.**