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":eek::eek:

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:confused: 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 :hug:

Oh Marcia I am so sorry you are feeling so bad. :(

I think I would try to call the Tysabri nurse in the morning. I'd also be sure to let the neuro know, next time you see him/her, how you were treated in the office today.

Sending hugs and Praying you feel better soon!

:hug:

((((((( Marcia )))))))

Hi Marcia!

I wish I would've gotten on chat earlier last night! I didn't know about any of this til now. 'Faye' was no doubt on a break and figured she could just let you sit there until she was done with her 'me' time. Don't you wish they would treat like an adult and just tell you what's really going on instead of letting you stand there all day!

I think you should call your neuro and demand to speak with your doctor before your infusion. Tell them exactly why you need to speak to the doc, including your mistreatment yesterday. Let them know that you won't stand for this kind of treatment. I've had to do this before and now they are on their best behavior when I call. And yes, you can be in denial for a LONG time.:rolleyes: LOL Sometimes I'm still in denial and I was dx about 9 months ago! I'm in a relapse and still sometimes question whether I have MS LOL! I think it's just wishful thinking for me.

I've been on Copaxone and Avonex. I get my first Ty infusion on the 13th. Sorry this is so long. I'm here for you Marcia. PM me if you need or want to talk. (Big hug)

I'm so sorry to hear you don't feel well. I hope things are better today.

I would try to call the neuro and if you don't get through there, then call the Tysabri nurse and tell her what is happening.

Even if you do go in for the infusion, you will get some attention when she goes through the pre-infusion checklist and she will more than likely call your neuro for instructions as to what to do, when she finds out how bad off you are.

Good Luck! Please let us know how it goes!:hug:

Marcia? What happened with your Tysabri infusion? Did you get it or not? I do hope you're feeling better, and we'd like to hear what transpired.:hug:

Thanks!
 

First, thanks for the replies, PM's and emails. Today, was a no-go. Rescheduled for Thursday:) I did talk with "Faye" today who so happens to be the Office Manager. She said that one of the other girls up front told her how I was talked to.

I just told her if she didn't have time to speak with me, that's all they had to tell me. Lunch is over at 1:30, she did admit. I'm not dwelling on all that anymore! Just seriously looking into a new Neuro.

The nurse at the infusion center is so awesome. She said she didnt care if I was in a flair or not, never let that stop me from coming for my infusion. We just both agreed today was not the day.

As for the denial, I received the results of my field vision test.....Evidence of ON in both eyes, with the left being the worst!:eek: I guess that means no more denial!:rolleyes:

Thanks again, and sorry for my vent!
:grouphug::Thanx:

I found you!
 

Hey Marcia!

I found you... it took me a few hours but I found ya! This place looks like lots of fun and I can't wait to get involved but...

FIRST THING FIRST - I'd hate to have to come kick that receptionist's booty for being ugly to my buddy! It's not that far and I can be there in no time at all... you just give me the word and I'll pounce her!

So tomorrow's the big day and I just know that everything is going to be just fine! I'll be thinking about you tomorrow! :hug::hug::hug:

Sometimes when the flair fairy comes to see me I have to take the dreaded steroids and I remember it makes you act like the devil so thats a last resort!

Hang in there with me - I'm still trying to figure out all the smileys and stuff!

Angie

I am so glad you found your way over here! Thanks for being my body guard!!:p I would do the same for you! Was just a big shock, as I have never had a problem with that office. I don't call all the time, only go to scheduled appts. After 9 months, I still don't know when to call and when not to call! So, my PCP has me come once a month (I love him), this next time will be a long chit chat! He's just awesome.

Yea, you know me and steroids! That's a no no. :rolleyes: I wish I could take them, I know I would feel better.

You will find your way around here in no time and the people here are GREAT! Don't forget to go in and introduce yourself, am sure many will remember your name from you know where!:p:welcome_sign:

:hug: