This is a letter I got this morning for Ploymyositis

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This is a letter I got this morning for Ploymyositis

Postby chrishasms » Wed Mar 18, 2009 7:49 am

Hi Chris,

I did HiCy at Hopkins this November for my Polymyositis and am doing very well. I hope you are as well. I have a friend with MS that would like to do HiCy but she said Hopkins wouldn't have anything to do with her because she is not recurring and remitting and not in a wheelchair. I am not sure if she talked to the right person. Did you remember any of these restrictions? I had my Hopkins doctor talk to Brodsky so I got in easily. What are the beginning steps to get in the door?

Also, I wanted to let you know that having your Post-HiCy Care on your site was very helpful. I did not get the same info and it was useful now that I got Shingles. Fun fun.

Thanks again,
Jen

**Another condition for Revimmune**
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Postby AbooD » Thu Mar 19, 2009 3:50 am

Chris I have a question regarding Hicy, So is it ok for a just diagnosed patient to try Hicy? Does he have to be RRMS or wheel-chaired ?
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Postby chrishasms » Thu Mar 19, 2009 7:36 am

From what I could gather from the email, and believe me I get them everyday, is his friend either had a progressive form, or he wasn't enhancing and wasn't in a wheelchair.

If you have an active MRI you qualify from my understanding. Me personally, and my advice to most which makes some people mad, if I had an active MRI my next call would be Johns Hopkins. No sense in waiting until the disease did what it did to me to end it and get better if you can.
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