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blueflygirl
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/12/2009 12:33 PM (GMT -6)   
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.

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 3/15/2009 7:55 PM (GMT -6)   
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.
__________________
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


blueflygirl
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/15/2009 8:39 PM (GMT -6)   
Thank you so much for your reply -- I think I'll stick with
the Tysabri for awhile longer. turn

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 3/18/2009 2:20 PM (GMT -6)   
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.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


blueflygirl
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/18/2009 9:34 PM (GMT -6)   
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!

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 3/19/2009 8:21 AM (GMT -6)   
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.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

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