View Single Post
Old 03-26-2008, 04:46 PM
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Quote:
Originally Posted by barb02 View Post
I jsut heard from my neuro's nurse and she said my blood work came back positive for antibodies. He wants me to continue treatment for 3 more and then be retested because they said this could be temporary. Now I know why I was having reactions during my infusions. So i guess I will see how my infusion goes next Wednesday.

I am so upset right now; I can't stop crying. Since I have had problems with betaseron and copaxone too I am out of options.
Barb, This is not the end of your options!

First, there's a difference between persistent and transient antibodies. You absolutely may have either. Usual protocol is to continue to treat if benefits have been seen, despite a positive test, and re-assess after three months, and you state that you have seen positive benefits. Make sure that you pretreat with benadryl or claritin and make sure they are running the IV at a slower rate. In many folks it makes a HUGE difference. Tell your neuro you want the MRI at 6 months to see whether it shows improvement, to help you decide on your next move, because of the problems you have experienced.

Second, despite how you may feel now, as Av8rgirl stated, there are other options available. Investigation into MS treatment is continuing to move forward after being stalled for YEARS! More is known about MS today and there are more meds in the pipeline than ever before, some with excellent data coming out of the trials! Look at www.clinicaltrials.gov for more information on trials for MS.

There are many folks here who have been hearing "A cure in our lifetime" for years. This IS going to happen at some point. With the advances in science in the past decade, I truly believe we are closer than ever to figuring out the whats and whys of MS. I have an up and coming Neuroscience/Molecular Biology Masters candidate in my family and she has a personal stake in this fight. It's one of the reasons she has chosen the path she is on, as a researcher.

Until it's figured out, there will continue to be better treatments designed to delay progression and reduce relapses. That's what we have now and despite the drawbacks and flaws of each drug available, and the fact that they do not work for everyone the same way, we DO have options.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline  
"Thanks for this!" says:
barb02 (03-26-2008)