Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 Rahman, Since you are recently diagnosed you may not know that projesterone antagonists right now are toxic for humans. Remember, rats/mice are not humans and nothing has been published on Mifepristone on humans from trials. I hope you are not taking this on your own. Why bring on potential disaster to your body? A synthetic projesterone antagonist is in the works, but not in human trials yet. The Pharnext trials are only 4 months old. While Dr. Cohen's work is remarkable, results on a 4 month trial do not hold up even with generics. I will be in touch with him later this year for a possible one year update. And those trials will have included other meds throughout the year. Even in NT3, which proved it helps PEOPLE with CMT hasn't made it to further trials or market. And judging from all the Ascorbic Acid trials, the results appear dismal. If you read through our Archives you will find many posts from people who tried Ascorbic Acid on their own. Why would you want to risk using a medication or combinations for your CMT? I certainly wont. Diet, exercise, low stress, full social and career life, family, friends, physical therapy, occupational therapy are all proven to manage symptoms and certainly risk free. You say you've had CMT for 30 years - why the diagnosis NOW? Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 gretchen, thank you for the response. if diet, exercise etc. were working for me i wouldn't be pursuing other options. i think you and i are in different places healthwise. God bless you if you've been able to manage the disease, but my body IS a disaster right now. regarding mifepristone, of the likely millions of morning after pills that have been used, toxicity has been a problem in a handful. should there be caution and thorough investigation? of course. but EVERY drug is toxic to the human body. levaquin, a commonly prescribed antibiotic, can be toxic and has killed people. toxicity depends on how much one takes, how often one takes it and what one takes it with. i would never take any drug without physician supervision. but neither will i forgo pursuit of a potential therapy. i have a friend with muscular dystrophy. predictably, doctors told him there's no treatment. yet he's been using " toxic " drugs for over 15 years, is generally healthy, has significantly slowed the progression of the disease and lives a fairly " normal " life. if he had waited for fda approval, he'd be dead. if you are well enough to wait for human trials and article publication to try a therapy, then by all means wait. some of us are not so privileged. rahman Quote Link to comment Share on other sites More sharing options...
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