Gearing up for my first...
 

Well - tomorrow (Tuesday, April Fools Day) - I am scheduled for an 8:30am appointment with the oncologist for my consultation. I was originally told my infusion would be same day - but last week I had heard otherwise, so that remains to be seen - no matter how much I begged, cried, and had anxiety attacks - no one would confirm anything other than the consult part of the appointment - nor would they tell me next available day that I could get the infusion...all they kept saying was, "It's up to the discretion of the doctor."

However, they did confirm that there were empty "chairs" available for infusions - and that the pencilled me in for one of those tomorrow morning. Of course, at this point, I don't believe anything unless I can see and touch it. :( And that's often not good enough as my vision is sucky - lately lots of double vision....and my touch - well, my hands keep dropping things.

I am working VERY hard to believe that my first infusion will be tomorrow morning some time. My anxiety has been overwhelming...as I posted late last week - this part is so unfair - it's bad enough that this entire disease has a mind of its own and I can't control it....but not to be able to know a firm time for this treatment is beyond mind-blowing at this point. This part of the MS should not be causing this much pain and problems for me. Oh well...c'est la vie.

So - since I've been so distracted by my anxiety over the possibility that I may not have the tx tomorrow - now that I'm facing it in a little over 12 hours - I am starting to get nervous.

I wonder what things would preclude me from being able to receive tx. No one will tell me. Should I eat before I go - or not. I'm not going to premedicate - but I did just buy 3 kinds of benadryls - liquid, liqui-gels, and caplets. LOL. Must be prepared. Not sure if I should take my regular daily meds (cymbalta, allegra-D) or not take them. Any advice??

My nerves are kicking in. Sigh. :eek:


~Keri

One day at a time, Keri. :hug: I hope it all goes well tomorrow. Keeping my fingers crossed for you. We will both be at the doc tomorrow at the same time. You for your first one and me for my last one (clinical trial).

Take care...rest...plenty of fluids today and tonight.

Keri!

Quit psyching yourself out! Your doctor should have told you that you could or could not take your regular meds tomorrow. Since you have an appointment at the infusion center with a doctor before your infusion which may or may not be scheduled, please ask that doctor whether or not you should take your meds.

This is the TOUCH procedure as described on the Tysabri website:

http://www.tysabri.com/tysbProject/t...on-therapy.xml

Do what you would normally do every day! Eat, drink lots of fluids, RELAX, do some of that calming therapy! After you are done, you may be tired, just from your nerves, if nothing else.

When you are up to it, come and let us know how it went. We'll be looking for you!:hug:

Just heard from my doctor and the results from my blood work and ultrasound were normal. Yeah! One positive thing I can say about my doctors is that they normally get back to me as soon as they have test results. So the tysabri appointment tomorrow is a go.

Hi There,
I'm new around here but Not new to MS!

I'm posting here today because I have been on Tysabri since Oct 06. It has been a Looong haul to say the least. I was DX in July 01. I started Avenox Aug 01 and continued until July 06. I even tried LDN for a few months. It worked great for my bladder but that was about it for Me.
I just had Tysabri #19 Yesterday and I am Living Life Again!!!!

It took several months until I started to Really feel better. I am now living a full life - well as full as possible as I still have that crappy leg that has followed me around for years but I Now have the energy to drag that crappy leg around.
I can walk So MUCH better than I did just a few months ago. My balance has improved dramatically.
A few weeks ago I was able to take a short hike down to the river and played in the water. It was such a blast!!! Just a Wish 2 years ago.
Last week one of my Dreams came true when I was able to dance like Crazy all by myself without falling over - What a night that was!!!

I know that we are all different and meds are a choice blahblahblah I know that whole spiel........but For Me Tysabri has been a WONDER DRUG!!!

I'm not here to talk Anyone into or out of Anything. I'm just here to share My experience with Tysabri. Yes - There are risks. I've always been a Risk Taker.
In the beginning I had to drive myself 275 miles each way in the winter to Portland, OR for My Tysabri treatment - Talk about Risky!!!

I'm finally getting infusions close to home now - Thank God!
As my reward after each infusion I order my favorite Thai food To Go. I call it my Ty-Thai day. I actually look forward to it as I know with each one I am doing Something Positive for Myself to fight My MeSs. And l LOVE Thai food

I may die from PML - I may not, But I played in the river and I danced and laughed and lived. I'm going to dance each and every day that I can..................

This is a copy from another board that I posted on a few months ago.
Things have just gotten better as each month goes by:p

Life is So Good,
DD~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"If you think you can or you think you can't, you are right either way.

I did it!
 

Hi everyone -

Well, from the title of this - you can tell - I did it - I had my first Ty infusion today!

I was at the cancer center by 8:30am for my consult with the oncologist. He came in, talked to me for about 3-4 minutes. Said he's seen great results in my doc's patients (my doc and the rest of his practice send over 40 people to this site alone - being that it is right across the street from their offices!)....and that he's only seen one person "fail". This was good news. He just told me to relax....

I asked if I could take my usual morning meds - and he said yes. Then I asked if I could take my ativan for anxiety - as I don't do so well with the I/V insertion - and he laughed and said sure. I asked about benadryl - told him I had brought 3 types of benadryl with me. He chuckled again. He said they could put it in my i/v if I wanted. Then he had the nurse walk me to the infusion room.

I was first one there - being that it was only 9am at this point. My best friend was there with me. The nurse told me that she could put the benadryl in - but that it was as higher dose than you would usually get from the OTC stuff - and that it makes people sleepy. I chose to just use my liquid benadryl (bubble gum flavor). I showed the nurse the place where I've had the best luck in receiving I/Vs - as I've had 2 week-long tx of steroids - and that usually the nurses blow the veins quickly - but that last time, I made it the entire week using my hand - so she did just that. I was so pleased that she was willing to listen to me.

The room was absolutely FREEZING. I finally asked for a blanket. My friend gave me her sweatshirt which she put on top of blanket....and then eventually I got another blanket. I had a pillow behind me, the chair reclined. Very relaxing actually.

I fell asleep shortly after the infusion started (gotta love ativan for that!). I woke up after it finished. Waited a lil while longer....and then was released to go home.

As I was leaving, another woman was coming in for her 12th or 13th infusion. She told me that the Ty has not been helping her - she was wheelchair-bound and appeared to be completely disabled (had to be transferred from chair to chair using a board, etc.). I was a little too out of it to keep talking with her - and the room was getting full anyhow...so then I left.

I was home by 11:15am this morning....pretty amazing since I first got to the doc's office by 8:30am. Less than 3 hrs from door to door. (Of course, the office is literally 5 minutes from my house!)

I was also able to schedule my future Ty's for a Friday! Yippy.

My only concern is..... now don't laugh....
and this is NOT an April Fool's joke...

I feel totally fine. I mean - I feel no different - not better nor worse.

I am a little achey - though I don't know if I can attribute that to the infusion or not sleeping last 2 nights, etc.

I'm actually a little nervous - and keep joking that I don't know if the meds were actually in the I/V because I think I wasn't paying attn to the nurse when she put it in - meaning, I didn't see her put it in? She did give me the box from the meds (I asked for the lot# info, etc.). But really, I felt nothing as the meds were being infused. Is this normal?

So, now I guess I sit back and wait.......hope the "magic" happens. I guess it's also time to move into the land of the living - don't need to spend my day crying on the phone trying to get this to happen, etc. Now I can try to live - and learn to live with MS. Oh, I do need/want to schedule my next MRI for next week if I can...but other than that....

I start a program at UCLA on Monday evening. It's thru the NMSS - it's called Living Well - it's for newly dx people - and it looks phenomenal...it's 12 weeks long - and I hope to get a lot out of it.

Hope everyone is well,

~Keri

ps/it feels REALLY good to report that things went as they were supposed to for once.

Barb:

Glad to hear that everything came back ok!! I hope when they start your infusion tomorrow, you don't spout liquids like a sprinkler from all the tests you have had recently! Let us know how it goes for you tomorrow!

DaDiva:

Welcome and thanks for the report! Nothing like a good word from a veteran Tysabri user! I liked the Ty-Thai thing! Too bad we don't have a Thai restaurant here in the woods, I could DO some Thai food after I get my infusion. I usually just go shopping and eat whatever...:( I do plan on having a special do next month because it will be my lucky # 13 infusion, making it one year!!

Keri:

BRAVO!! YAY!!! You have a PM!!! LOL!

Glad it all went well for you!!:hug: Welcome to the club!

Barb: Yay!! I'm sooo glad everything is okay!! Whew!! Keri: I don't feel a thing when I get my infusion either. It's as if i'm getting 'nothin' shot into the vein LOL. I'm happy things are going better for ya!!

No more tysabri for me
 

Well, I had another reaction today. This one was the worst; so my neuro who was in the clinic and came in twice said no more. I had to be given a second benadryl iv and was put on oxygen. I made it about 40 minutes this time before I had the reaction and they had slowed down the infusion. The other two times I had a reaction I made it through the infusion before I told the nurse. I had to push the panic button because noone heard me when I called for help. They came really fast then. :eek:

I have an appointment with him (neuro) tomorrow morning to talk about the future. He is not sure what to do with me and was going to check with some colleagues at the ms center in St. Louis. I think I am going to take a time out from being a lab rat.

I'm so sorry Barb! :( :hug: