NYTimes article on Hope

Estrogen and the other sex hormones are a part of the MS puzzle. The work of Rhonda Voskuhl at UCLA foces on high doses of estrogen as a treatment. Also I am aware of other MS nuerologists also using this treatment-one at Yale. I myself had acute onset of MS from hormonal shock which was debilitating. I have a friend who was bed ridden and received treatment with injections in the spinal cord of testosterone and after 30 years with MS recovered. Other people in the group, however did not see a benefit. Again this brings us to perhaps different types of MS.

a posting at

This bulletin board

reads:

I got this email from NYTimes this morning: "To all of you who read my article about the ethics of hope, and inquired about the drug taken by the MS patient at the end of the story: here is the substance of an email she sent me with information that she is permitting me to pass on to you. Please read it carefully!

Wishing you a New Year full of hope and healing,
Jan Hoffman

From patient: The new medication I am on is called 4-aminopyridine and they are in the process of doing trials with MS patients and spinal injury patients. The drug has been available for a long time in Europe. I am currently getting the 4-AP from a compounding pharmancy (College Pharmacy) in Colorado. Even though the medication is not FDA approved, all the ingredients are, so this pharmacy mixes them together and sends them to you. You just need a prescription from a doctor. Health insurance does not cover 4-AP so it costs about $75 per month. There are more risks since it is not controlled. The most serious side effect that has occurred in the trials is seizures. The seizures were at the higher doses so I am taking a smaller dose but it is still working unbelievably. If you receive any questions about the drug please pass on this information and tell those who are interested to speak with their doctors. If their doctors have questions they can call my doctor, Dr. Mark Tullman, at the Columbia MS Center at 212-342-8647. Following are a couple of links to more information.
one
the other

According to almighty Google, she's on Novantrone. Which, of course, isn't a pill, and is already approved here, so I don't know what's going on. I maybe found a snail mail address for her; I'll send her a letter and, if it's her, maybe she'll let me know if she's using something else.