Just curious...

patientx · Post by **patientx** » Tue Mar 17, 2009 10:04 am

check that.

I think it means "laughing out loud."

See, I'm terrible with these texting acronyms.

gibbledygook · Post by **gibbledygook** » Tue Mar 17, 2009 10:19 am

Thanks for that, patientx. Must get with the programme.

Sorry for hijacking the thread.

chrishasms · Post by **chrishasms** » Tue Mar 17, 2009 11:42 am

Simply Robbie, I will see people with my old issues, totally able to end this mess now, and they won't and it frustrates me. I have survivors guilt too. I want everyone to know what it's like to have MS that heals itself. But don't worry Rob, except for posts directed at me, and one other post in here I have to keep up, I'll shut up and just show my MRI pics or vids of me living when the time is right.

robbie · Post by **robbie** » Tue Mar 17, 2009 11:51 am

I want everyone to know what it's like to have MS that heals itself

ms heals itself all the time

chrishasms · Post by **chrishasms** » Tue Mar 17, 2009 11:55 am

See I have had 2 neuro's who have never seen, nor heard of an MS lesion healing itself. The MRI guy thought he messed the test up. Maybe I have 2 neuro's and an MRI guy here in Denver who aren't with it.

robbie · Post by **robbie** » Tue Mar 17, 2009 12:01 pm

Do any people with ms have lesions that come and go?

Lyon · Post by **Lyon** » Tue Mar 17, 2009 12:11 pm

patientx · Post by **patientx** » Tue Mar 17, 2009 12:31 pm

You make this treatment as if it was getting over a bad flu. I have to disagree, this treatment is much more serious than having the flu.

You are correct. Shortly after my diagnosis, and after reading about HiCy here, I called Hopkins (I don't live far from there, and am pretty familiar with the hospital). Keep in mind, I was open to trying the treatment, and I was interested in making an appointment to discuss it.

I was told by someone at JH that this is a very aggressive treatment - it is full-blown chemo. (This still did not scare me off.) I was told it was probably not appropriate for my case, since I was newly diagnosed, and my symptoms were pretty mild. In any case, they will only take people that show enhancing lesions, and my MRI did not. That right there disqualified me. And, finally, I was told there was a several month waiting list for getting HiCy off-label. This had nothing to do with the supply of the drug, but the fact that many people had signed on, and the protocol calls for fairly in-depth patient monitoring. It's not simply a matter of a week of infusions and you're gone.

By the way, Red Penguins is a woman, named Keri.

chrishasms · Post by **chrishasms** » Tue Mar 17, 2009 12:47 pm

I agree with all that was said. I just wanted to make clear the lack of drug is what is keeping it from being opened up at additional sites. I was told the training for such a procedure is rather easy.

robbie · Post by **robbie** » Tue Mar 17, 2009 12:51 pm

yes, lesions often dissapear in MS http://www.medhelp.org/posts/show/732621 with or without specific treatments,

does this mean anything to you chris ?

patientx · Post by **patientx** » Tue Mar 17, 2009 1:13 pm

I just wanted to make clear the lack of drug is what is keeping it from being opened up at additional sites.

I can believe that.

chrishasms · Post by **chrishasms** » Tue Mar 17, 2009 2:19 pm

Sure Rob. But to me, and my MS, and the fact for 5 years of my life lesions grew and increased and never went away. So may be the case but I quote my MRI guy who has 14 years reading them, "I've never seen healing like that before. I thought I missed an entire shot."

Keep in mind it has dick to do with disability. But, unlike before, Rehab actually sticks where as before I could work out all day and still be worse the next. The only thing that is stopping me from getting stronger is me...I am a bit lazy.

**PLUS that article also said they don't ever remylinate completely, I have lesions that were there that are gone. No black hole, no lesion, gone.