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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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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
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