Thank you for the response. She does see an opthamologist probably
once a month to check on her papalledema...right now she has it and
when she told her neuro he said to increase her lasix to 90mg a day.
He seems to be a quack but we live in a small town and there's no
other doctors - plus she's on state medical so she doesn't get much
coverage.
As far as Diamox goes she did take it in the beginning but it made
her sick. She also takes valium, percocet, and tramadol.
She's only had one LP - I've heard that this is a treatment that a
lot of patients use but they don't seem to want to do that here. The
one she did have seemed to help a lot.
We're looking into getting the shunt but again because of her medical
we have to wait until she's accepted which will be a few more
months. Can anyone tell me how the shunt works? Is it a good
improvement? She's very scared about having the surgery and wants to
know if it's worth it.

--- In ptc@yahoogroups.com, "Jennifer Stark" <jenniferstark1976@...>
wrote:
>
> --- In ptc@yahoogroups.com, "DaShaunda" <dashaunda_h@> wrote:
> >
> > I found this website trying to found out more information about
> PTC.
> > My sister was diagnosed in November 2007 so we're pretty
unfamiliar
> > with the disease and it seems like the doctors are too. It just
> seems
> > odd to me that she can be so sick that she can't move from the
couch
> > and when she calls the doctor he says to up the water pills - it
> seems
> > that's his answer to everything (She's taking 80mg of Lasix...is
> that
> > normal?) Our family has a lot of unanswered questions and I'm
> hoping
> > to find some answers here...
> >
>
> Hello,
>
> First thing is I am glad that you found this group. Secondly
your
> sister needs to get to a doctor who knows about PTC. Is she seeing
a
> neuro Dr? Even if she is she needs another one. Did the Dr. mention
> Diamox, that is what a lot of us take and it is around 1000mgs a
day
> others also take things for pain if needed a lot of people do need
the
> pain meds. It can come and go some people have found relief with
> loosing weight and some it doesn;t do anything for. It is very very
> important that she had a dr who can fully understand the importance
of
> getting her fluid levels down. I am in by no way tring to scare you
> but this is a seriouse disease and with out proper treatment she
can
> loose part or all of her vision. She also needs to be followed by a
> opthamologist preferably a neuro opthamologist who can really check
> her vision and check her optic nerve to see if there is any
sweeling.
> It is important to understand that this disease effects people
> differently. For instance a lot of people have the migranes, I
however
> do not have them. Some have no vision problems and some have a lot.
> Ther is not enough info about this diseas but this is a great group
> and they are very helpfull here. Please feel free to write me with
any
> questions you have God bless
> Jennifer
>