advertisement
Closed Thread
 
Thread Tools Display Modes
Old 04-15-2009, 09:08 AM #981
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

PE,

My dizziness was caused by the whole vision thing. I had ON as my one and only symptom before diagnosis in Sept. 2004. No pain, just the loss of vision in my right eye.

The next relapse I had the dizziness along with nystagmus and oscillopsia as a result of ON. It kept coming back with every relapse, and I am not sure if it ever really left, since I was relapsing every three months or so. My cognitive function was affected, it caused unrelenting fatigue from trying to compensate (IMO) and when questioned, the neuro I was seeing at the time said the cause of the dizziness and all the other stuff could not be attributed to only the ON, because I had MS!

I started Tysabri in May of 07 and within six months my vision was clear, the dizziness was gone, the nystagmus was gone, the cognitive stuff was gone and the fatigue was reduced. I still have fatigue, along with stiffness and spasticity, but baclofen and provigil relieve them. I was able to cut back on the dose level on both medications since starting Tysabri, now doing half or less of what I was taking before starting infusions. My vision level is back to prediagnosis level. I haven't had a relapse since I started Tysabri. Every MRI since the first one I had at the six month mark has shown improvement, no new lesions, no enhancing lesions and lesions either gone or greatly reduced in size.

In short, Tysabri has given me back the life I had before diagnosis. I truly believe that if it hadn't been withdrawn from market and I had started on it when I was scheduled to in March of 2005, I wouldn't have the spasticity and stiffness and fatigue I am still dealing with. I believe that there is still a chance that I may see ongoing improvement.

I know Tysabri doesn't work the same for everyone, but there's always hope, and it HAS given me back the life I knew before MS.

(btw-Bacardi and Coke DOES plump up the veins! I laughed at "better living through chemistry cause it used to mean something totally different to me too!)
__________________
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:
ewizabeth (04-15-2009), Natalie8 (04-15-2009), PolarExpress (04-16-2009)

advertisement
Old 04-15-2009, 09:25 PM #982
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default

Polar: good luck with the Tysabri!! I really hope it's successful for you.

RW: slowing down the infusion worked like a charm. Two days later I am just about recovered and only had mild tolerable side effects. Way better than the 5 days of complete and utter misery. I was sick as a dog the last time. So I'm very happy!
__________________
On Tysabri and love it.
.
Natalie8 is offline  
"Thanks for this!" says:
ewizabeth (04-15-2009), PolarExpress (04-16-2009), Riverwild (04-16-2009)
Old 04-16-2009, 12:54 AM #983
PolarExpress's Avatar
PolarExpress PolarExpress is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Red Wing, MN
Posts: 3,166
15 yr Member
PolarExpress PolarExpress is offline
Grand Magnate
PolarExpress's Avatar
 
Join Date: Jan 2008
Location: Red Wing, MN
Posts: 3,166
15 yr Member
Default

I had ON before I was dx'd..I've had trouble focusing my eyes on one spot ever since..Just caught myself closing one eye to type this..Ha..It would be great if that would go away!
__________________

.
PolarExpress is offline  
"Thanks for this!" says:
Natalie8 (04-16-2009), Riverwild (04-16-2009), Supra_kid (04-18-2009)
Old 04-16-2009, 04:59 AM #984
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

My opthalmologist was the doc who originally said "MS"

I went to him after the vision started closing up in my eye. I told him my pupil wasn't contracting and expanding properly. After a few days of tests he said "I think you may have MS" I started laughing because I was sure that it was going to be "brain tumor"

I told him MS was a whole lot easier to deal with. He cautioned that it could be many other things and made me an appt. with a neuro and scheduled the 3 day IVSM. I saw the neuro two days later. He was of the mind that it was CIS and did all the standard tests, bloodwork, MRI, LP, etc. When the tests came back he said he thought it was MS but since I hadn't had more than one incident he was still listing it as CIS.

Like clockwork, within a few months ...relapse...IVSM...relapse...scheduled to start Tysabri...removed from market...Copaxone...no help...and finally ...Tysabri. I did my homework back before it was withdrawn from market, searched out every detail about when they started working on it, who was involved in the development, made myself a pain to those people for MORE details, talked to people in trials, learned way more than I ever thought I would about neurology and science, fought to bring it back to market with a whole lot of other people and I haven't looked back since.

None of it was easy. It took a long time to find a neuro who would prescribe it when it was returned to market, but I was prepared and I found him right in my back yard! He's my partner in my brain health now and I trust him completely. He fills me in on the details that he gets and I fill him in on what I find out. He says when I stop searching for more info, that is when he is going to start worrying about me!
__________________
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:
ewizabeth (04-16-2009), Natalie8 (04-16-2009)
Old 04-16-2009, 05:01 AM #985
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

Yay Natalie!!

Praying that each infusion gets easier now!!
__________________
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:
ewizabeth (04-16-2009), Natalie8 (04-16-2009)
Old 04-16-2009, 12:23 PM #986
ewizabeth's Avatar
ewizabeth ewizabeth is offline
Elder
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Default

Hey, we're on page 99!
__________________
Wiz

Turn Left at the next election.
.


RRMS DX 01/28/03 Started Copaxone again on 12/09/09
ewizabeth is offline  
"Thanks for this!" says:
Curious (04-16-2009), Natalie8 (04-16-2009), Riverwild (04-16-2009)
Old 04-16-2009, 03:53 PM #987
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

YAY!!

13 more posts and we lock this thread and open TY2!!
__________________
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:
Curious (04-16-2009)
Old 04-16-2009, 05:07 PM #988
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default

Whoohoo! Ty 2!!! Let's have a party!

Polar, I started with optic neuritis also (like RW too). It was mild but always kind of lingering. Since I have been on Tysabri my vision has gotten crystal clear. Sometimes it shocks me...I'm driving around at night looking at signs or walking in the grocery store just looking at stuff and every thing is so sharp--like scary sharp!! I've always had glasses/contacts but don't ever remember my vision being this good, even after getting new lenses. My neuro told me that the top 3 things Ty. was especially good for were 1) eyesight 2) fatigue 3) cognitive issues.
__________________
On Tysabri and love it.
.
Natalie8 is offline  
"Thanks for this!" says:
Riverwild (04-16-2009)
Old 04-16-2009, 05:09 PM #989
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
15 yr Member
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
15 yr Member
Default

Quote:
Originally Posted by Curious View Post
We have posted about it. They are waiting until they hit the 1000, then Pm'ing me.
Just reminding...don't go over the 1000.

Make a new thread and I'll sticky the new one also. (close the old)


ADDED:

This thread is now closed. It will be left in the Stickies. Here is link to the new thread. http://neurotalk.psychcentral.com/thread84538.html
__________________

.

Last edited by Curious; 04-18-2009 at 11:37 AM.
Curious is offline  
"Thanks for this!" says:
Riverwild (04-16-2009)
Closed Thread


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Anyone else on tysabri? barb02 Multiple Sclerosis 19 08-28-2008 09:06 PM
Tysabri Talk msladyinca Multiple Sclerosis 115 04-01-2008 08:14 PM
Tysabri ArmyMahmaa Multiple Sclerosis 7 02-07-2007 04:17 PM
Who at Braintalk is on Tysabri? BBS1951 Multiple Sclerosis 26 10-21-2006 09:41 PM
More Tysabri News pantos Multiple Sclerosis 0 10-06-2006 08:52 PM


All times are GMT -5. The time now is 06:41 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.