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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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Thanks, Sally 
Tamiloo (and others!) -
I am also one of the 44 people who underwent HiCy at Hopkins. I actually did it TWICE. My first treatment was July 2008....and I remained in remission for a few months and then started having relapses. After reading as much as I could find and talking with specialists, I decided that it made perfect sense to try it again, as maybe I needed a second "reboot" to really knock the MS away.
In May 2009, I went back to Hopkins for a second round of treatment....
AND I'M DOING WONDERFULLY!!
I have now gone 10 months without any relapses - that is the LONGEST period I have ever gone - having needed steroid treatments every two to three months prior to this second dosing.
My MS was fairly aggressive and came on like gangbusters in January 2008. My doctors had warned me that it was unlikely that I'd ever go more than 2-3 months without a relapse. And they were right...that is until HiCy!
In July 2008...right up until the first HiCy - I had to use a cane to walk. Within weeks of that treatment, I got rid of the cane and haven't needed it since! My last steroid treatment was April 2009 - before my re-dose of HiCy.
I know many people will say "oh, it's only been 10 months, so you can't know for sure anything" - and they would be right....except that this 10 months is so strikingly different than the first 14 months of my disease.
I'm feeling fairly good these days. Occasionally I have some fatigue - but I must admit that I have sleeping problems (don't sleep well) and that could account for the exhaustion. I also have a near 3.5 year old running around at home...so that adds to it as well.
Check out the blog of Chris (www.chrishadms.com) - he also underwent HiCy. He is also doing MUCH better than before the treatment (though he still has some issues).
My last two MRIs (at 3months and 6 months post HiCy2) were free of any new lesions...this is also a change from my previous MRIs, which always had more lesions and active ones. I've had no activity with the lesions and some even show some healing.
I still worry nearly every day that I will relapse...it is a fear...every little moment of fatigue or vision issue reminds me of the MS. But in the meantime, I am LIVING. I hadn't been living in the 14 months prior to the HiCy2. This past October, I even rode 60 miles in the MS Bike Ride.  I couldn't have done that without having had the HiCy.
Tamiloo - if you'd like to know more - you can do a search for "HiCy" - as I posted here about it a lot! There is also www.thisisms.com which has an entire forum dedicated to it.
~Keri
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