Hello everyone
I am sure some of y'all may remember me. I have been talking about the
dilantin, the movement and pain in my right leg & foot. I have also posted
about a gradmal seizure I had in June.
I really want to thank all of you that have responded with information, support
and there experiences. I know I have not responded to some, but I have been
reading and it really felt good. So thanks!!

Anyway....
I saw my neuro. yesterday and had a very long talk with him. The two main
topics were the amount of meds. he has me on and the amount of seizures i have
been having. We did talk about the problems I had with dilantin. He did take
me off of it July 10th. I told him that not only was the dilantin effecting me
but it also was interfering with my daily life. He understood. So no more of
the dilantin, yea!!
With the amount of seizures I am having monthly (it is around 5 to 6) he has put
me on Zonegran. The pills or 50 mg. and he is starting me off slowly. Each
week I increase the med by 50 mg. morning and night. He has me doing this until
it reaches 200mg. both morning & night. If it does and the Zonegran is really
working then he will take me off the Lamictal. Now if it does not, then there
is two other meds. he will try one is topamax and I forgot the name of the
other. If the other two do not work he started talking about a new procedure
being performed. It is called Responsive Neurostimulator System (RNS). I found
it very interesting. Has anyone herd about it? If not here is a link
http://www.neuropace.com/
I love to learn about new things that doctors are doing to help those with
epilepsy/seizure disorders.

For now the RNS is something for me to just think on. I and the doctor would
like to see how the Zonegran or the other two - if needed - work.
I know very little about the zonegran and would love to get responses from
others about it. So if anyone can help, it will be greatly appreciated.

Now as for as the problem that I am having with my r. foot, leg & even my arm,
my doctor does think that it could be a seizure, just now for sure. My fiance
recorded one going on. So my doctor wants a copy to learn from and do research
with the other neuro's to get a better idea of what it could be and how to help.
My fiance is going to make the copy for him. I go back in 2 months to see my
doctor and will give it to him then.

I also learned that there is teat being performed about a new medication for
Partial Seizures. They do not have a name for it yet - just a code to go by.
Johnson & Johnson Pharmaceutical Research & Development is performing it. The
study will enroll approximately 500 participants from around the world. My
doctor is one and he is looking for 10 participants. Of course he does not
think that I need to do this. I agreed. I just thought it was very
interesting. I wish I could give more info. on it. Just do not have any. I
have tried looking it up on the Internet, but did not come across anything.

Sorry this is such a long letter. Again I would like to thank everyone. I do
hope that all has been going well.

Like I asked if anyone has info. on the zonegran, just let me know.

Thanks

Take care everyone!

Ashley





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