--- 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