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Posted 3/12/2009 6:33 PM (GMT 0)
I have PPMS - have had Betaseron, Novantrone and Tysabri - they now want to start me on Cytoxin. Has anyone had any luck with this drug? Thanks in advance for your reply.
Posted 3/16/2009 1:55 AM (GMT 0)
Hi, I am also one with PPMS. I was in the hospital about 2 weeks ago for Cytoxin Treatments because I had them in Feb. of 2008 in Chicago and they seemed to help me a lot. My Neuro here in Idaho decided that it was the only treatment that had done me any good so he suggested to do them again. Well, the treatments I had this time were twice as many as I had in Chicago and they really knocked me for a loop. My wife even told me that she didn't think these treatments did me any good. I have started losing my hair (not that I had much to lose) and have really felt so exhausted since I got home. I decided that I have had enough and told the doctor that I wanted to go back to work so tomorrow I am going back to work. Having PPMS isn't fun, and I pray to God that someday soon they will find a cure for it. Well, thanks for letting me vent. I wish the best for everyone who has been diagnosed with PPMS.
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Posted 3/16/2009 2:39 AM (GMT 0)
Thank you so much for your reply -- I think I'll stick with

the Tysabri for awhile longer. turn

Posted 3/18/2009 8:20 PM (GMT 0)
blueflygirl,
Where are you from? If you are around Chicago, there is a great Neurologist at Rush Hospital (Dr. Stefosky) that specializes in MS. Just wondering.
Posted 3/19/2009 3:34 AM (GMT 0)
I am now living in Buffalo, NY- however, my sister lives just outside Chicago in Orland Park. I go to see her as often as possible. I am presently being treated by Dr. Frederick Munschauer who is the director of the Jacobs Neurological Institute at Buffalo General Hospital. I was HIGHLY recommended to see him by 2 top neuro's in South Florida who had concluded that I had MS - that was July,2002 -- when I moved here in Jan.2003, I went to see him & he said I didn't have MS - 1 year later I could barely walk & then he decides I have PPMS! Needless to say, I don't have much faith in the guy so I truly appreciate your suggestion! Thank you so much!
Posted 3/19/2009 2:21 PM (GMT 0)
You are welcome. You will need to make an early appointment to see him. I had to get my neurologist here in Idaho to call him (My neuro here did his internship under him at Rush and stays in touch with him a lot) and get me an appointment because when I called in December, I was told that they didn't have any openings until May but my neuro told him that wasn't acceptable so he gave me an appoinment for February. I saw one of his interns and then Dr. Stefosky and was admitted that day into Rush for Cytoxin Treatments. I had 7 Treatments, one evry 8 hours, and then was released after the last one because since I was out of network, it saved me some money. Good luck to you. By the way, I am originally from Joliet, Ill and know exactly where Orland Park is.
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