advertisement
Reply
 
Thread Tools Display Modes
Old 02-14-2009, 05:06 AM #1
RedPenguins's Avatar
RedPenguins RedPenguins is offline
Member
 
Join Date: Jan 2008
Location: Southern California
Posts: 308
15 yr Member
RedPenguins RedPenguins is offline
Member
RedPenguins's Avatar
 
Join Date: Jan 2008
Location: Southern California
Posts: 308
15 yr Member
Exclamation my follow-up at Johns Hopkins

Hi everyone,

Well, on Tuesday night I took the red-eye out to Baltimore from Los Angeles. I arrived in Balti at 9am...headed to JH. It has been 7 months since I had hi-cy....and I had a relapse in December that I am still recovering from.

My appointment wasn't until 1pm. Had three hours to kill and they let me rest in the "stretcher room" - where there are two stretchers, no door, just a curtain. People came in and out, but I just rested.

At 1pm, Dr. Hammond came to find me. We talked and he performed a bunch of tests. I tested better than I did in June before treatment. However, no doubt I would've tested even better in November, when I was at a high point in my health.

Dr. Kerr joined us and we talked about options.

They both dismissed the notion that weight was any factor in how well the treatment worked or didn't work - or with dosing.

I also told them that I was having a hard time with the Copaxone. Even after 6 months of it, I am still having reactions. I then asked them if they had ever tried one shot. A dose of copax wouldn't hurt anyone - which they confirmed. However, they have never tried it. I pressed them to get their hands on a shot and see what it is like. I feel like I am giving myself a bee sting each and every night. It is anything but pleasant. Don't think they will do it - though I think we should present a united front and pressure them into injecting themselves! They told me that if it meant I would stay on the copaxone longer, don't do it every night. I will continue to do it every night - though if I miss a dose, I will not beat myself up as I usually do (in 6.5 months, I maybe have missed 3 doses). I was again told that I'd only need to be on it for a year.

I'm back in a wait-and-see place again. My next MRI is in 6 weeks or so... and depending on what it shows, will determine if I need/want a re-dose of the HiCy. My last MRI, in December, showed enhancement, new activity, and new lesions. If my next one shows this, they are open to redosing if necessary....but they really think that there is no reason I will not go back to how well I was doing before this relapse - and that I will continue to improve. They said that in the original study, one person has a flare-up early on - within the first 6 months, but then went on to do really well.

I flew out of Balti on a 5pm flight and was back in LA by 9pm.

So that was my whirlwind 22 hr trip!

~Keri
RedPenguins is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Curious (02-16-2009), FinLady (02-14-2009), Jodylee (02-18-2009), karousel (02-14-2009), MooseasaurusRex (02-14-2009), NurseNancy (02-14-2009), SallyC (02-14-2009), snoodles (02-16-2009), tkrik (02-18-2009)

advertisement
Old 02-14-2009, 11:17 AM #2
barb02's Avatar
barb02 barb02 is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
barb02 barb02 is offline
Grand Magnate
barb02's Avatar
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
Default

Keri, Thanks for the update. I hope the doctors are right and that you will continue to improve. I love your idea about each doctor should have to give themself an injection of copaxone. In a way it would also be great if they could experience an IPIR -- they tell us that they do not cause any damage.
barb02 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RedPenguins (02-14-2009)
Old 02-14-2009, 11:53 AM #3
tovaxin_lab_rat's Avatar
tovaxin_lab_rat tovaxin_lab_rat is offline
Elder
 
Join Date: May 2007
Posts: 7,009
15 yr Member
tovaxin_lab_rat tovaxin_lab_rat is offline
Elder
tovaxin_lab_rat's Avatar
 
Join Date: May 2007
Posts: 7,009
15 yr Member
Default

Thank you, too, for the update Keri. I hope you continue to improve.

I remember the copax shots and I too had problems with them. I tried heat, ice, and then arnica gel, but spraying benedryl on the shot site afterwards along with the arnica gel was my "cocktail" that worked the best.
__________________
Cheryl
Dx: MS 2001 CRPS 2009




“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
tovaxin_lab_rat is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RedPenguins (02-14-2009)
Old 02-14-2009, 12:47 PM #4
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Thanks so much Keri, for keeping us up to date. I sure hope the Docs are right and things will keep improving for you.

I love, giving all the Docs a shot of Copax...LOL!

__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RedPenguins (02-14-2009)
Old 02-14-2009, 02:52 PM #5
NurseNancy's Avatar
NurseNancy NurseNancy is offline
Grand Magnate
 
Join Date: May 2007
Location: Florida
Posts: 4,240
15 yr Member
NurseNancy NurseNancy is offline
Grand Magnate
NurseNancy's Avatar
 
Join Date: May 2007
Location: Florida
Posts: 4,240
15 yr Member
Default

thanks for your update.
it all around sounds positive.
i hope that the drs are right and you will con't to improve.

please keep us posted on your mri.
be well.
__________________
Judy
trying to be New Skinny Butt
______________________
You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
--------------------------------------
"DESIDERATA" by Max Ehrmann
NurseNancy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RedPenguins (02-14-2009)
Old 02-15-2009, 02:26 AM #6
Judy2's Avatar
Judy2 Judy2 is offline
Senior Member
 
Join Date: Sep 2006
Location: PA
Posts: 1,236
15 yr Member
Judy2 Judy2 is offline
Senior Member
Judy2's Avatar
 
Join Date: Sep 2006
Location: PA
Posts: 1,236
15 yr Member
Default

My thanks also Kerri, for the up-date. Your whirlwind trip sounds enough to tire you out for a week! I do hope the doctors are right about future improvement. You deserve alot of credit going through all the treatment involves -- and YES -- why shouldn't they share in some of the "fun" of those copax shots????

Take care and rest!!
__________________
_____________________________________________

.....Judy
SPMS -- FIBROMYALGIA -- Ouch! and Ouch!
.
Judy2 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (02-15-2009)
Reply

Thread Tools
Display Modes

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
Sjogren's neurological symptoms and Johns Hopkins Silverlady Peripheral Neuropathy 56 11-04-2013 11:54 AM
Johns Hopkins: Attention Sjogrens And Ms Patients sjogrens23 New Member Introductions 0 07-28-2008 10:21 AM
HiCy/Revimmune at Johns Hopkins RedPenguins Multiple Sclerosis 30 06-28-2008 11:03 AM
a long way to go to come back without any testing, my trip to Johns Hopkins fmichael Reflex Sympathetic Dystrophy (RSD and CRPS) 2 10-30-2006 01:45 PM


All times are GMT -5. The time now is 06:10 AM.

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.