my follow-up at Johns Hopkins

RedPenguins · 02-14-2009, 05:06 AM

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

barb02 · 02-14-2009, 11:17 AM

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.

tovaxin_lab_rat · 02-14-2009, 11:53 AM

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.

SallyC · 02-14-2009, 12:47 PM

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!

NurseNancy · 02-14-2009, 02:52 PM

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.

Judy2 · 02-15-2009, 02:26 AM

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!!

Thread Tools
Show Printable Version Email this Page
Display Modes
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode

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

Site Navigation

NeuroTalk Online Support Groups

my follow-up at Johns Hopkins

NeuroTalk Forums