new

New members should feel free to introduce themselves here

new

Postby TALEX » Thu Dec 02, 2004 1:16 pm

hello, just told 11/24/04, rrms, 42 , start tysabri 12/6/04 , scared
User avatar
TALEX
Getting to Know You...
 
Posts: 11
Joined: Wed Dec 01, 2004 4:00 pm
Location: California

Advertisement

Postby LindaR » Thu Dec 02, 2004 1:36 pm

Welcome....MS can be very overwhelming at first but once you get your arms around it things will calm down. You are doing all the right things and getting started on the new treatment is great! How did your first treatment with the new drug go?
User avatar
LindaR
Family Member
 
Posts: 89
Joined: Tue Nov 09, 2004 4:00 pm
Location: USA - Connecticut

Postby TALEX » Thu Dec 02, 2004 1:50 pm

Linda, thanks for the welcome. My first treatment is this coming Monday the 6th. I was told of my ms the morning that the FDA aproved the drug.
User avatar
TALEX
Getting to Know You...
 
Posts: 11
Joined: Wed Dec 01, 2004 4:00 pm
Location: California

Postby LindaR » Thu Dec 02, 2004 2:04 pm

Sorry, lost all track of time. It's only the 2nd. Good luck with your first infusion. I have had solumedrol infusions before and they are no big deal. Let us know how you make out. I was diagnosed this past February after a bout of Optic Neuritis. Been taking Avonex since March and LDN and seem to be pretty stable. I do have some fatigue and some tightness in my calves but for the most part I'm okay.
User avatar
LindaR
Family Member
 
Posts: 89
Joined: Tue Nov 09, 2004 4:00 pm
Location: USA - Connecticut

Postby TALEX » Thu Dec 02, 2004 2:22 pm

Linda that is how it started with me. 1988 in left eye and 1991 in right eye. And 13 1/2 years later I'm here. Thanks for the support. I should be back to work on Tuesday the 7th with an update.
User avatar
TALEX
Getting to Know You...
 
Posts: 11
Joined: Wed Dec 01, 2004 4:00 pm
Location: California

Postby LindaR » Thu Dec 02, 2004 2:28 pm

Wow that was a long time to wait for a diagnosis. Mine ON started in January 04 and I was diagnosed in Feb. 04 after an MRI and spinal tap.
User avatar
LindaR
Family Member
 
Posts: 89
Joined: Tue Nov 09, 2004 4:00 pm
Location: USA - Connecticut

Postby TALEX » Thu Dec 02, 2004 2:35 pm

Oct. 1998 after 1 month at Opthomolygists and Neuro (by the way Neuro said he sees no problem) vision back to normal. March 1991 Opthom. said he can't see anything, 2 weeks later vision normal. Now sensations in legs and arm.
User avatar
TALEX
Getting to Know You...
 
Posts: 11
Joined: Wed Dec 01, 2004 4:00 pm
Location: California

Postby Arron » Thu Dec 02, 2004 4:54 pm

Talex, it would be WONDERFUL if you could come back here on the 6th or 7th and let us know exactly how your first Tysabri infusion went-- the more details the better. There are many in our community anxious for real-world information on this therapy.

Thanks and all our well wishes and strength in this overwhelming time.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
User avatar
Arron
Volunteer Moderator
 
Posts: 892
Joined: Sun Feb 01, 2004 4:00 pm
Location: California, USA

Postby Jill » Fri Dec 03, 2004 7:43 pm

hi talex,
sorry to hear of your diagnosis. i wish you the best with the new treatment. let us know how it goes.
User avatar
Jill
Family Member
 
Posts: 26
Joined: Thu Nov 11, 2004 4:00 pm

Postby Chilcotin » Mon Dec 06, 2004 12:01 am

Good luck as you go for your Tysabri infusion today. I look forward to
hearing from you on how it went. I was just diagnosed in March and when I read about MS from just five years ago it is wonderful to have so many people working hard trying to figure it out for us.
User avatar
Chilcotin
Family Member
 
Posts: 34
Joined: Tue Nov 23, 2004 4:00 pm
Location: British Columbia, Canada

new DX

Postby Cathy » Mon Dec 06, 2004 12:52 pm

I also wish you success with your infusion. I am very interested in the monthly cost of this drug, if you don't mid sharing that info.

Cathy
User avatar
Cathy
Family Member
 
Posts: 97
Joined: Mon Apr 12, 2004 3:00 pm
Location: Florida/USA

tysabri infusion

Postby TALEX » Tue Dec 07, 2004 11:17 am

Thanks to all for your thoughts. The infusion took place @ 9:45 am, an hour later I was finished. Everything went well, I waited an hour after the infusion for any signs of trouble. The medical staff told me I was the first in California to receive the infusion after the FDA approval. No cost yet from the Dr. office. Will keep everyone posted.
User avatar
TALEX
Getting to Know You...
 
Posts: 11
Joined: Wed Dec 01, 2004 4:00 pm
Location: California

Postby LindaR » Tue Dec 07, 2004 11:24 am

Talex. Did you feel any side effects at all?
User avatar
LindaR
Family Member
 
Posts: 89
Joined: Tue Nov 09, 2004 4:00 pm
Location: USA - Connecticut

infusion

Postby Cathy » Tue Dec 07, 2004 11:46 am

Glad it went well-Keep us posted on your progress.
User avatar
Cathy
Family Member
 
Posts: 97
Joined: Mon Apr 12, 2004 3:00 pm
Location: Florida/USA

Postby TALEX » Tue Dec 07, 2004 11:50 am

I was nervous walking in, the medical staff was great. Just sat there for 2 hours did not feel anything strange, none the the possible side effects. My next infuse is 1/5/05. the nurse told me every 28 days, o.k. from 25 to 33 days from previous.
User avatar
TALEX
Getting to Know You...
 
Posts: 11
Joined: Wed Dec 01, 2004 4:00 pm
Location: California

Next

Return to Introductions

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service