I'm here - in Baltimore!

A board to discuss Revimmune as a potential therapy for multiple sclerosis

I'm here - in Baltimore!

Postby RedPenguins » Sun Jun 01, 2008 1:45 pm

Hello everyone,

Just a little update - I'm here in Baltimore! It's about 4:40pm local time... Got in EARLY this morning on the redeye from California. Too early to check into the hotel....ended up going to the Baltimore Aquarium. However, couldn't stay awake and fell asleep during one of the shows (one where you get wet and poked at!).

At hotel now - waiting for a local friend to come visit for dinner.

Tomorrow (Monday) is the big big day! I have stuff to print out still...will do that tonight.

Flying was a nightmare - as I was by myself - and very disabled. Very much in a bad exacerbation these last two weeks. Thankfully I have finished taking the oral prednisone (lemme tell you - taking 1000mg a day of prednisone pills - NOT so good. Do not recommend that AT ALL).

Some of my symptoms definitely flared up more from flying....which I had heard happens to some people. And probably no coincidence that my first ever flare (or sign of MS) happened after I had just flown. Go figure.

But I'm here.....nervous and excited....

Still working on list of questions for the docs.....though I keep drawing a blank.

Hope everyone is well,

~Keri
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Advertisement

Postby mrhodes40 » Sun Jun 01, 2008 1:56 pm

Good luck Keri, we all wish you well! Get some rest.
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Loobie » Sun Jun 01, 2008 2:52 pm

Keri,

I can't say how much I hope this works for you. I'm just so intrigued by the HiCy process and am waiting to see how Chris and you all fare since I'm still waiting to see if my Tovaxin works. Good luck and Godspeed.

Lew
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby susan » Sun Jun 01, 2008 4:14 pm

Keri,

I am anxiously awaiting to hear about your trip- You Go Girl! Susan
User avatar
susan
Newbie
 
Posts: 7
Joined: Fri Jan 14, 2005 4:00 pm
Location: rhode island

Postby chrishasms » Sun Jun 01, 2008 4:21 pm

Kick ass job
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby Jamie » Sun Jun 01, 2008 5:23 pm

Fantastic.

You'll do fine.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby Jamie » Mon Jun 02, 2008 7:13 pm

SO???????
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby mrhodes40 » Tue Jun 03, 2008 9:46 am

Yes Keri post away and tell all
marie :P
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby RedPenguins » Tue Jun 03, 2008 1:22 pm

Okay....

So, according to the doctors, I am an "excellent candidate" for HiCy (yes, I have this on tape!) :)

I spent quite a bit of time with Dr. Kerr and Dr. Hammond and then off to the cancer wing (eeek) to meet with Dr. Hesdorffer.

Chris, I didn't ask for my EDSS score....didn't think about it till I was on the plane today - but I will email and ask. I know I read somewhere that apparently you're automatically a 6 if you use a cane - but that seems weird to me - especially when you read the actual criteria. (I do use a cane for stability.) Last month, my neuro put me at between a 3-3.5.

I'm planning on moving forward. In fact, is it too soon to call Donna to see about my insurance approval? Tee hee.

Before I left yesterday, Dr. Hesdorffer ordered all of the blood tests - they took 17 vials from me! Yikes. It was already 4pm, I had been at JH since 10:30am....and it didn't occur to me until I was driving back to the hotel last night that I had only eaten a dunkin donut and some wheat thins all day. Okay, not so smart - I barely thought I'd be able to drive back to the hotel!

I have the list of tests I will need my local doc to order. I actually have an appt scheduled with my current neuro for Thursday. I will keep that and let him know what is up and hopefully he'll just order the tests for me. I will not be having my next Tysabri infusion (which would have been this Friday).

My goal - to be back in Baltimore by the end of the month, first week in July the latest. I guess the hard part now is waiting to hear from the insurance company. Sigh. Blue Shield has been good to me over the years....though when I tried to get approval for Tysabri - it wasn't the greatest (they wanted me to do the interferons first, but I was bypassing that). Although, even with the roughness of all of that, it only took a week total to get the approval! All they needed was a strong clear letter from my neuro stating why I couldn't use the interferons....but getting my neuro to move on anything was torturously slow. My guess is, JH will send in all of the appropriate and necessary info from the start :)

I looked at both Tremont Hotels yesterday afternoon (even though my head was spinning after blood tests). They were okay. I got an email today about the Spinnaker - which looks really great...so I'm considering that, too. I guess I just need the dates so I can plan.... plane tickets to get for people, shopping to do, etc.

Now I just need to wrap my head around the fact that I'm gonna be bald. (No pun intended) To a wig-maker I go....


~Keri
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Postby Lyon » Tue Jun 03, 2008 3:19 pm

.
Last edited by Lyon on Mon Nov 28, 2011 2:57 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby pvns2005 » Tue Jun 03, 2008 3:24 pm

I'll be at the Spinnaker june 22nd. Good view of the fireworks I hear..
pvns2005
Family Member
 
Posts: 85
Joined: Fri Nov 17, 2006 4:00 pm

Postby RedPenguins » Tue Jun 03, 2008 5:28 pm

PV - are you going for consult or treatment?

I am thinking I will be staying at the Spinnaker for the treatment! As I said, my goal is the end of June!

Bob - yes, I hope so - on my way to something better....or at the very least - on my way to not declining as fast as I am!

~Keri
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Postby Lyon » Tue Jun 03, 2008 5:46 pm

.
Last edited by Lyon on Mon Nov 28, 2011 2:56 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Jamie » Tue Jun 03, 2008 6:43 pm

yeah, what Bob said.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby pvns2005 » Tue Jun 03, 2008 7:34 pm

Going for treatment the 22nd
pvns2005
Family Member
 
Posts: 85
Joined: Fri Nov 17, 2006 4:00 pm

Next

Return to Revimmune (cyclophosphamide or cytoxan)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service