This Is MS Multiple Sclerosis Knowledge & Support Community

Hey Keri! Hang in there girl! Isn't it hard to believe that it was a year ago that you and I were both so filled with hope and bugging the Hopkins staff to death to get approvals for HiCy? We must have exchanged a hundred emails! It's close to over now-the hospital part anyhow. At least you'll be ab...

Chris, believe it or not, I was on the verge of asking you if you'd been taken off of it yet! I knew you were about a year out. I was also curious if we'd be given the option of continuing should we want to. That'll be a tough decision for me. I tolerate it well and with Blue Cross/Shared Solutions ...

So how is it so far for you Steve? BTW you are not the Steve I met at JH in March of 08 are you? Hey Chris. I like your web site by the way! I guess you could call me stable. I had a great three month appt. with improvements in all categories but didn't do as well on the walking at seven months (ha...

Hi! I'm also in NC and I did the HiCy treatment at JH. I used to see a different doctor at RNA but that relationship didn't end well so that's when I headed up to JH. I stayed sick for a solid weak after the chemo but would have the occasional wave of nausea for a while after. However, my wimpy stom...

Stephen, how much rehab have you done? Hey Chris, That's where I'll admit to falling short. I did HiCy back in July but I didn't start PT until October. I've been going two to three times per week to basic PT. Your idea about a long term situation really appealed to me. I might as Dr. Kerr about a ...

Congrats on some better than expected news Keri. I mean, at least it's not a given that you'll need retreatment. I'm sort of amazed/surprised at how much stuff the Hopkins docs describe as "Yep, that's normal." Serious paraphrase there. :P My MRIs are unchanged but I'm still struggling. I'...

L wrote:I know that it's been mentioned before, but what's the dose of Copaxone that HiCyers are currently on? It's a lot higher than the standard dose, no?

I'm on the standard dose. I use just one regular Copaxone needle each day.

I'm so very sorry Keri. You and I were sort of partners in the approval process and I remember the excitement with which we compared our progress, via email, in dealing with the JH staff and our BCBS people! Goodness, the hope we were filled with back in June seems like a lifetime ago! I guess if th...

Keri, Glad to read that you're doing well! That's one thing I forgot to mention...my straight hair came back curly! :P There isn't one curly haired person in my family of two parents and five children. But I'm just happy it came back. When I first read that Chris relapsed, my thoughts were "Ok,...

:lol: I've kind of got an idea that it's the same deal as treating cancer......it's essential to get every last bad cell or sooner or later the disease will be back...with it in mind that MS is not generally fatal so the researchers set the dosage level of Revimmune at a level to be effective yet a...

Hi Chris,

Do you know if they were treated with Copaxone or not? My MRIs were stable when I saw Drs Hammond and Kerr back and October so I'm 4.5 months out and about the same.


Are you pretty certain that you'll do the treatment again if it's offered?

Steve

Do you think the MS could have changed Kyle's personality? I know of individuals with MS who in additon to symptoms that can be seen, have personality changes - sometimes becoming very angry. It's possible and if so, he has my deepest sympathies. MS has taken a lot from me and I feel episodes of ma...

That was me who had my mommy with me and I'm proud of it. We're a very close family. I had brothers, sisters and in laws there too. I never married because after college, I got busy taking care of a father who eventually died of leukemia while I was attending grad school. By the time all of that wor...

After reading stevens story, I dont think I am that anxious to have this done. I think the diapers and heavy sedation did it :? Kyle I had done pulse Cytoxan before and I knew it was going to be rough. But I was the exception, not the rule. I wouldn't let my experience scare you. I didn't have to b...

Hey Keri! You know, as far as your numbers being low, I'd seriously chalk that up to each person being different. You didn't get sick at all from the Cytoxan where I spent four days sick, semi-sedated and even wearing a diaper the last three! Ugh. Not a pleasant memory there! But on the flip side, m...