Good for you Tammy and Millie
You sure wouldn't catch me being a gunie-pig for anyone specially if my seizures were even near under control.
Even the odd breakthrough a person can handle. These meds are just trials that haven't even been approved and
like they say how do you know if you are getting a placebo. You know when meds are advertized on TV....ever
figure out what that means....usually a new (or med in this case) starting up needing customers, and needing
to prove that they are the best. Drs. offices are flooded with salesmen each day with their samples - these
are the ones we can get for free. The reason we have a hard job getting a decent appointment. Our doctors
are under pressure from these companies to try their new meds on patients.
Maybe I am an ol' granny and have had this Epilepsy for centuries now but some of the new names have never
heard of.:)) Still on the oldies :))smile:))
Julie
Julie Hope
epilepsyhealth@
http://www.2betrhea
----- Original Message -----
From: Uniquepnk@tds.
To: epilepsy@yahoogroup
Cc: mylmy@bnin.net
Sent: Monday, February 23, 2009 8:24 PM
Subject: Re: [epilepsy] Ep interviews
Millie,
About a year ago, my neurologist wanted to be in a study program like that for a medicine that had not been
approved by the fda yet. The papers I got with it said some people would get the medicine and some would get a
placebo,you wouldn't know whether you were getting it or not. They wanted me to come every week and have
bloodwork done and other tests done. That is 3 hours from where I live and I couldn't do all of those trips. I
don't blame you for not doing it,since your seizures are so well controlled. Mine aren't, but I still wouldn't
do it. Take care.
Tammy
---- mylmy@bnin.net wrote:
> Hi everybody,
>
> Twice I have answered a letter in this group saying I would be
> willing to be interviewed about EP.
>
> For the first one--I was called and they wanted me to get into
> a group and try a new med. Now why would I want to change meds if I
> have been controlled for 2 -4 years? I can see that if I was having
> szs -- I might want to try it. She just couldn't understand why
> I wouldn't want to do that. I think I finally hung up on her.
>
> The second one was just a few months ago. I think Jewl said she
> was in this. They wanted me to report regually when I take my meds,
> when I had a sz, how I felt after wards and so on. I started on this
> one but since I take my meds regually and have no szs-- I decided it
> was not worth my time.
>
> So I wrote and told them why I was cancelling. They sent me a $10 gift
> certificate for Amazon. I used it to get Suze Orman's 2009 book.
>
> Has anybody else had any experiences like this?
>
> Millie
>
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