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Old 02-04-2008, 11:01 PM #1
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SurvivingMSwithHOPE SurvivingMSwithHOPE is offline
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Join Date: Oct 2007
Location: Knoxville, Tennessee
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15 yr Member
SurvivingMSwithHOPE SurvivingMSwithHOPE is offline
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Join Date: Oct 2007
Location: Knoxville, Tennessee
Posts: 119
15 yr Member
Default Mad, Tysabri, flair(?) and major vent (sorry)

I am scheduled for my first Tysabri infusion tomorrow at 2pm. I feel like I am in the beginning, heck maybe middle of the worst flair ever. Honestly, I have been doubting that I have MS because I have felt so good. But of course that was after I got off Avonex. Can you be in denial for 9 months???

I had to go to my Neuro's office today to pick up my prescription for fatigue. No way could I get there when they opened, so I made sure I got there right after lunch before the waiting room got full. It took everything I had to get dressed, let alone drive in a monsoon rain today. I prayed the whole way there and back. No problem getting the script, but I asked to talk to the Tysabri contact there WHO SAID IF I HAD ANY QUESTIONS OR CONCERNS AT ALL SHE JUST CALL HER ANYTIME. Well the receptionist corrected me on how I said "Tysabri", probably cause I corrected her on calling me 'Mar-c-ia".

I said OK, I really need to talk to "Faye", (name changed to protect the guilty). She said sure let me get her. Now remember NO ONE is in the office. I stood there and stood there, feeling like I was going to pass out any minute. My fingers are so numb and that hasn't really ever been an issue, my feet well they feel numb half the time. She came back by the window, and said "OH, "Faye" hasnt been up here yet" (Im thinking) Uhh, no I'm standing here because I love the conversation we are having.

I said NO, she said well "Just sit down". I felt like saying Ok, Momma. Now I know I feel horrible, but I have never had any problem there. I sit for awhile all the while feeling worse, I was actually scared and thinking, Please God, let me make back to the car. I finally get up slowly as 2 people walked in, signed in and were called back!!! I said can you please remind "Faye" that I am here. She said "Just what exactly do you need to know"

SOOO......I told her I have some questions due to my feeling so bad and should I still go" reschedule? see my Neuro? or what????????? Then I looked up from talking to her, and see "Faye" standing back in the break room/kitchen just laughing and having a good ole conversation with another employee. As I am standing there unable to say nothing, feeling like I just wanted to cry and lay down in the floor, the receptionist said..............

Where are you having your infusion, I told her and she said......"WELL, WHY CANT YOU CALL THEM!!! OR, Just call the Tysabri people. OK, my Neuro's office is soooo excited because they will be an infusion site before the end of the year Now this is my Neuro, but if I went there and received that kinda crap as a new Tysabri patient, I wouldn't go back. They actually changed my infusion site due to the treatment of "their patients".

I just said, "You know what, just forget it" I had to get out of there, I was bouncing off the walls, so scared I was going to fall, or worse yet fall in the parking garage. The Tysabri nurse is only in Tuesday thru Thursday. I couldn't call her today, do I just go, call her in the morning or what???

I am soooo sorry this is so long, I just needed someone to listen!!

Love you all
__________________
Marcia
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