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#27375 From: "sherry-heath267@..." <sherry-heath267@...>
Date: Thu Mar 1, 2007 8:25 am
Subject: (No subject)
sherry-heath267@...
Send Email Send Email
 
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#27374 From: Brandie Leehy <brandieleehy@...>
Date: Wed Feb 28, 2007 8:39 pm
Subject: Re: Names for site --- Please give me your thoughts
brandieleehy
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i know, I didn't notice until after wards. sorry :) 
 
brandi - Illinios

Nicole Wargo <black_panther_nikky@...> wrote:
opps, i think my comment came out wrong. i most certainly don't like ptc. i think the name living with PTC / IH is a good name for the new site.

Brandie Leehy <brandieleehy@yahoo.com> wrote:
Yes we have to learn to live with it, but I don't think ANYONE likes it at all !!!!!

Nicole Wargo <black_panther_nikky@yahoo.com> wrote:
I LIKE LIVING WITH PTC / IH.
 
THAT IS WHAT WE ALL HAVE TO LEARN HOW TO DO.

kiki <kikijrfan8@verizon.net> wrote:
Here are a few names that I have come up with for the new site tell me what you all think if you would please.
 
 
 
Benign Intracranial Hypertension (Pseudotumor Cerebri)       
 
I.H /PTC Forum or support board
 
PTC Learning to live with PTC or Pseudotumor Cerebri a forum for support and guidance.
 
Welcome to the new home of PTC guidance forum or group.
 
Life with PTC or Pseudotumor Cerebri
 
Living with PTC / IH
 
 
 
Thanks
Kiki



  Nikky

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.


We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.



  Nikky

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.


Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

#27373 From: Nicole Wargo <black_panther_nikky@...>
Date: Wed Feb 28, 2007 4:36 pm
Subject: Re: Names for site --- Please give me your thoughts
black_panthe...
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opps, i think my comment came out wrong. i most certainly don't like ptc. i think the name living with PTC / IH is a good name for the new site.

Brandie Leehy <brandieleehy@...> wrote:
Yes we have to learn to live with it, but I don't think ANYONE likes it at all !!!!!

Nicole Wargo <black_panther_nikky@yahoo.com> wrote:
I LIKE LIVING WITH PTC / IH.
 
THAT IS WHAT WE ALL HAVE TO LEARN HOW TO DO.

kiki <kikijrfan8@verizon.net> wrote:
Here are a few names that I have come up with for the new site tell me what you all think if you would please.
 
 
 
Benign Intracranial Hypertension (Pseudotumor Cerebri)       
 
I.H /PTC Forum or support board
 
PTC Learning to live with PTC or Pseudotumor Cerebri a forum for support and guidance.
 
Welcome to the new home of PTC guidance forum or group.
 
Life with PTC or Pseudotumor Cerebri
 
Living with PTC / IH
 
 
 
Thanks
Kiki



  Nikky

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.


We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.



  Nikky


Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

#27370 From: frances amos <francesreneeamos@...>
Date: Wed Feb 28, 2007 6:13 am
Subject: Re: meds vs. pressure
francesrenee...
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I just want everyone to know that I went and got 3 different opinions and every one of them was the same. They could not understand why she would torture someone like that.Can you believe this. I was told that I don't need spinal taps like that and no one should ever have to do this. I really recommend every one to go see a nuero-optomitrist. She ran so many tests and after a whole year of going through this I never even knew there was such a thing. I quite taking all meds and I still have headaches but I go in a couple of weeks to get those takin care of. They said I don't need the shunt either. She also said that when they do the spinals and have you get in the fetal position your pressure will always tend to get a little elevated.
    In December I did this little experiment with it. I quite taking the meds and then I waited a couple of months to go for another lp and guess what----No Change in the pressure. That's how I knew something wasn't right. I would highly suggest everyone to get another and another opinion if possible. I hope everyone is having a pain free day.   Frances of K.C.

mary kadak <maylove143@...> wrote:
Yes i have went through the same thing for 4 months i had lp's done once a week or once every two weeks.  it is hard.  I even knew were to tell the doctor to put the needle.  now i have a vp shunt put in i had the surgery on aug06 it helps but i still get headachs but not as bad as they were. but still get pretty bad.  I am also 15 weeks pregnet right now and and i have a 16 month old daughter.  it is hard do to i am getting real bad headachs.  Some times i can't left my head off the bed  and now i am working full time i had been in and out of work i was hospitalize in dec06 for two weeks for pain management and some times i still end up in the ER for help with the pain i  have

francesreneeamos <francesreneeamos@yahoo.com> wrote:
Hi everyone, I hope everyone is doing well!! It's been a while
since I've been on the computer. I was having lp's done every other
week for quite some time. My doctor had me on all the meds and
everything for over a year now. I was almost at the giving up point
because from what I hear is it never really goes away.
A couple of months ago I stopped taking all the meds to do a
little trial to see what my pressure was before and after I quite
taking them. Nothing changed!! Can you believe this? here I am
taking all these meds and they are making no difference!!
I finally got a second opinion. I was told there is NO reason
I should be on all these meds, and getting these lp's done so
frequently if there is no change. I even tried something else, I
waited 2 months before I went back for another LP. Still no change!
Then I got an appointment with a Neurosurgeon. He also
said "There is no reason for this much torture to your body" I can't
believe my ears!!! Next week I am going to see a Neuro-
optimologist. Almost a year and a half and I've never even heard of
one of these docs. He said this doc will determine whether or not I
really do have ptc. Have any of you been through this??? I'd
really like to know if I'm not the only one going through this total
shock!! Please let me know that ther really is HOPE. Maybe I've
been misdiagnosed or something.
Ffrances in K.C.




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#27369 From: frances amos <francesreneeamos@...>
Date: Wed Feb 28, 2007 6:00 am
Subject: Re: meds vs. pressure
francesrenee...
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HI Karey, my name is Frances. and I couldn't tell you how many lp's I have had. My doc was doing them every other week for a while. Could you tell me the name of the book because I am still doing as much research on this as posible?
  Thank you so much for responding. Hope all is going well.

karey baker <butterflygurl48@...> wrote:
my name is karey baker from ohio i am on meds called diomox 500 mg and the are working good for me my site is good , no headaches,or any other symptoms my neralogist is excelent he actually wrote a section on ptc in a medical book he is great... his name is dr korsmorsky out of cleveland clinic  only had to do the one lp and that was at diagnosing.

francesreneeamos <francesreneeamos@yahoo.com> wrote:
Hi everyone, I hope everyone is doing well!! It's been a while
since I've been on the computer. I was having lp's done every other
week for quite some time. My doctor had me on all the meds and
everything for over a year now. I was almost at the giving up point
because from what I hear is it never really goes away.
A couple of months ago I stopped taking all the meds to do a
little trial to see what my pressure was before and after I quite
taking them. Nothing changed!! Can you believe this? here I am
taking all these meds and they are making no difference!!
I finally got a second opinion. I was told there is NO reason
I should be on all these meds, and getting these lp's done so
frequently if there is no change. I even tried something else, I
waited 2 months before I went back for another LP. Still no change!
Then I got an appointment with a Neurosurgeon. He also
said "There is no reason for this much torture to your body" I can't
believe my ears!!! Next week I am going to see a Neuro-
optimologist. Almost a year and a half and I've never even heard of
one of these docs. He said this doc will determine whether or not I
really do have ptc. Have any of you been through this??? I'd
really like to know if I'm not the only one going through this total
shock!! Please let me know that ther really is HOPE. Maybe I've
been misdiagnosed or something.
Ffrances in K.C.



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#27368 From: "Joanne" <jjgmd94@...>
Date: Wed Feb 28, 2007 5:40 am
Subject: Re: meds vs. pressure
joannedelo
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Well, I can relate to all of you (unfortunately).  I was just
diagnosed with PTC in January.  I've suffered with headaches and all
the "classic symptoms" for what seems like forever, and it was like
pulling teeth to get a doctor to believe me.  It got to a point where
I figured that I was meant to suffer, and that I'd just have to deal
with it.  I went to the opthamologist because my vision was so blurry
that my doctor referred me (I think she was just "passing the
buck").  Fortunately for me, I saw the right eye doctor who took one
look inside my eyes and said out loud "OH GOD!"  It was really bad -
I had already lost some vision in my right eye . . . ANyway, after a
few very uncaring appointments with a neurologist in town (she wanted
me to have LP's EVERY OTHER DAY), I opted to get a second opinion at
Mayo Clinic in Rochester, MN>  I am so pleased with my care.  We have
a definate Plan of Care now.  I am being followed by a neurologist, a
neurosurgeon, a neuro-opthamologist and a massage
therapist/reflexologist.  My Opening Pressures have been very high,
and unfortunately, a VP shunt looks like it is going to be
inevitable, but at least I have doctors who believe me and care about
my well being.  On a side note:  Don't be afraid to get a second (or
3rd or 4th ) opinion.  No one knows your body and your symptoms
better than YOU.
Best of luck to you all.  I'm glad that I found a wonderful support
group.  This is not a fun disorder to suffer from.  ~Joanne


ptc@yahoogroups.com, "jasmine.here" <jasmine.here@...> wrote:
>
> I don't know much about the VP shunt as I don't have one myself,
not
> yet anyway.  I do however know about filing for disability.  I have
> been attempting to get disability myself for well over a year now.
> It is a long and tedious process and not something that happens
> quickly (which is what one needs considering your bills don't stop
> just because your sick and unable to work).  I have been denied
twice
> (which I am told is normal) and I have just completed the paper
work
> for filing for a hearing where I must go before the judge.  No
> attorney or lawyer will help me with my case either *until* I have
a
> court date set which I am told will take another 30 to 60 days.  In
> the meantime, things are very difficult as are yours.  The best I
can
> tell you is to take the advice on filing for disability and start
> NOW.  If you do, don't give up on it even though it is extremely
> frustrating (as is most of the things we deal with when having
> IH/PTC).  Look to friends and family and people *here* for support
> and feel free to vent.  I know and realize that most of the time it
> is difficult for the people you live with on a daily basis to
> understand how you feel and what you are going through.  But they
do
> love you and the people *here* care as well.  Please take extra
> special care of you and your children.  And most importantly, don't
> give up!  Hope this has helped in some small way.
>
> Wishing you the best,
> Jasmine
>
> --- In ptc@yahoogroups.com, mary kadak <maylove143@> wrote:
> >
> > My Doctor is good but there is not much he can do for is just
when
> the headaches get so bad and i start to vomit all the time he puts
me
> in the hospital for pain management i don't know if i would have
been
> worse with out the VP shunt but i don't want to find out.  But
right
> now it  is real hard for me due to being pregnant i some times feel
> like i am not going to make it through this pregnancy.  i have a
> young daughter who needs my time and i am working full time due to
i
> need to pay off bills since i have been out of work in the past 6
> months i have only work 2 months.
> >   But my doctor told me to go on permanent disability but we have
> rent and other bill i don't think we would make it on my husband
> check and the state disability money with 1 young child and another
> one on the way.
> >   It has also been taking a total on my marriage too. do to me
not
> feeling go and pain and he get upset and we start to fight.
> >   all i do is live my life day by day.  I always tell my self
when
> i wake up in the morning i say let see were today will take me.
Most
> of the time i have a hard time getting out of bed due to i wake up
> with a headache and also my shunt are has been hurting a lot
> >   please give any ideas you might have
> >
> > jwtooblsd blessed <jwtooblsd@> wrote:
> >           Hello, Iam sorry that ya'll are having so much pain. I
> > had a VP shunt put in back in December and have no
> > headaches. The neurosurgery group is listed #2 in the
> > nation. I do have vision loss in my left eye, but I
> > had that before the shunt.
> > --- Brandie Leehy <brandieleehy@> wrote:
> >
> > > I went through the same things. I have a VP shunt as
> > > well. Still have horrible headaches sometimes. The
> > > ER refuses to give me anything and calls me a drug
> > > addict. I am so fed up with all this. I can't find a
> > > doc who will give me anything stronger than vicodin
> > > 5/500 and those make me vomit and do little for my
> > > headaches. I asked my pain management doc for
> > > something stronger and he started going off on me
> > > threatning to take my vicodin away and leave me with
> > > nothing because he doesn't prescribe anything else.
> > > Real big asshole. Excuse the language. Just stressed
> > > and fed up. I don't recommend a VP shunt. Some
> > > might, but I don't. I am still just as misrable and
> > > now I have a huge lump on my head, that I can't
> > > sleep on, a tube going down my stomach that
> > > shows(which prevents me from bending or stretching
> > > backwards--it pulls), my hair is like 20 different
> > > links from being shaved so many times and I am just
> > > plain uncomfortable. I would take an LP over this
> > > anyday. Also, all the meds
> > > they give you for this have a tendency to give you
> > > kidney stones and I already had past occurences and
> > > I am a frequent maker, but they made me take them
> > > anyway saying they would help(they only made it
> > > worse and made me sound and act delusional and could
> > > no longer taste carbonated beverages). After 17
> > > lithotripsies and 6 stone retrievals, I now have
> > > medular sponge kidney. So that is the path I have
> > > traveled. Not saying you will but giving the heads
> > > up just in case.
> > >
> > > Brandi- Illinois
> > >
> > > mary kadak <maylove143@> wrote:
> > > Yes i have went through the same thing for
> > > 4 months i had lp's done once a week or once every
> > > two weeks. it is hard. I even knew were to tell
> > > the doctor to put the needle. now i have a vp shunt
> > > put in i had the surgery on aug06 it helps but i
> > > still get headachs but not as bad as they were. but
> > > still get pretty bad. I am also 15 weeks pregnet
> > > right now and and i have a 16 month old daughter.
> > > it is hard do to i am getting real bad headachs.
> > > Some times i can't left my head off the bed and now
> > > i am working full time i had been in and out of work
> > > i was hospitalize in dec06 for two weeks for pain
> > > management and some times i still end up in the ER
> > > for help with the pain i have
> > >
> > > francesreneeamos <francesreneeamos@> wrote:
> > > Hi everyone, I hope everyone is doing well!!
> > > It's been a while
> > > since I've been on the computer. I was having lp's
> > > done every other
> > > week for quite some time. My doctor had me on all
> > > the meds and
> > > everything for over a year now. I was almost at the
> > > giving up point
> > > because from what I hear is it never really goes
> > > away.
> > > A couple of months ago I stopped taking all the meds
> > > to do a
> > > little trial to see what my pressure was before and
> > > after I quite
> > > taking them. Nothing changed!! Can you believe this?
> > > here I am
> > > taking all these meds and they are making no
> > > difference!!
> > > I finally got a second opinion. I was told there is
> > > NO reason
> > > I should be on all these meds, and getting these
> > > lp's done so
> > > frequently if there is no change. I even tried
> > > something else, I
> > > waited 2 months before I went back for another LP.
> > > Still no change!
> > > Then I got an appointment with a Neurosurgeon. He
> > > also
> > > said "There is no reason for this much torture to
> > > your body" I can't
> > > believe my ears!!! Next week I am going to see a
> > > Neuro-
> > > optimologist. Almost a year and a half and I've
> > > never even heard of
> > > one of these docs. He said this doc will determine
> > > whether or not I
> > > really do have ptc. Have any of you been through
> > > this??? I'd
> > > really like to know if I'm not the only one going
> > > through this total
> > > shock!! Please let me know that ther really is HOPE.
> > > Maybe I've
> > > been misdiagnosed or something.
> > > Ffrances in K.C.
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Don't get soaked. Take a quick peak at the
> > > forecast
> > > with theYahoo! Search weather shortcut.
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Want to start your own business? Learn how on Yahoo!
> > > Small Business.
> >
> > __________________________________________________________
> > Do you Yahoo!?
> > Everyone is raving about the all-new Yahoo! Mail beta.
> > http://new.mail.yahoo.com
> >
> >
> >
> >
> >
> > ---------------------------------
> > Don't get soaked.  Take a quick peak at the forecast
> >  with theYahoo! Search weather shortcut.
> >
>

#27367 From: CrabbyWithPTC@...
Date: Tue Feb 27, 2007 11:29 am
Subject: Re: Re: Spam and new web site
crabbywithptc
Offline Offline
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Hi,
 
I don't know if you have realized it but the two groups you have been posting in are that: two completely different PTC groups.  THIS group does not have a moderator and I have never seen any communication from the owner.
 
The other group: PTC-SUPPORT-GROUP does have an owner and moderators. But they also have their own lives and families and can't be monitoring the group every single minute. Their emails do work and they are active in the group.
 
It does get confusing between the two groups. I eventually made two different screen names to differentiate between the two and it helped tremendously. I may get the same spam to both addresses but the delete button is an amazing tool that works with any screen name.
 
Going back into lurkdom,
 
                E
 
 
In a message dated 2/26/2007 2:13:21 PM Pacific Standard Time, kikijrfan8@... writes:
As far as the moderators in here the email addys are all boucing is
the reason I started all of this. So to conclude. I will quit posting
here.




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#27366 From: "Brenda" <bkmobes@...>
Date: Tue Feb 27, 2007 3:19 pm
Subject: Re: Long term Diamox
bkmobes
Offline Offline
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I can appreciate that reply.  Every time a doctor opens their mouth -
  I am shocked and appalled at what comes out.  This doc seems to
think that millions of people have this condition.  I then have to
ask....."why don't you have a better treatment/cure plan?"  that one
always stumps them.
It's very frustrating!
My husband and I were watching Discovery Health channel last night.
He asked 'why don't they do a series on PTC?; -- like on mystery
diagnosis.  I said - 'maybe i should write in and suggest it - cause
it sure is a mystery to all".
ugh!




--- In ptc@yahoogroups.com, Daniel Mcneill <de_mcneill@...> wrote:
>
> I can only reply - because they are clueless!! You do not have to
have papilledema to have high pressure - I would say that your body
has adjusted to the dosage of diamox and my no longer be working as
well - My neuro put me through all kinds of migraine/headache/anti-
seizure drugs to try to help alleviate the headaches but guess what-
nothing worked! At least not for the long term - some would work for
a couple of weeks and then stop - the majority I saw no improvement
with at all! Good luck -
>   Denia
>
> Brenda <bkmobes@...> wrote:
>           Sorry I've been away so long - just busy with life and
not feeling too
> badly. Until this past week - which has prompted this question. I
> have been on the same dosage of Diamox now for 3 months. During
the 3
> months - my pain level stayed around a 2. Now for the past week -
my
> headache seems to be worsening. Could it be that my body has
adjusted
> to this dosage of Diamox - and is now needing more? I don't know -
> just grasping here.
> On another note - I saw my Neuro-optho last week - and she said
since
> the 'papilladema' is gone in my eyes - that she can now refer me
to a
> headache specialist. I'm like WHAT????? What part of this are they
> not understanding. I don't have a migrane. I have a condition that
> is causing me to have severe pain in my head. I've tried two
> different migrane meds and they did nothing. Why would I need to
see
> a headache specialist?
> Brenda
>
>
>
>
>
>
> ---------------------------------
> Never miss an email again!
> Yahoo! Toolbar alerts you the instant new Mail arrives. Check it
out.
>

#27363 From: Daniel Mcneill <de_mcneill@...>
Date: Tue Feb 27, 2007 4:34 am
Subject: Re: ear infections and ptc
DE_McNeill
Offline Offline
Send Email Send Email
 
The high insulin level may - MAY - indicate that she has polycystic ovaries - that is one of the markers for that disorder. Many of us in this group have both pcos (polycystic ovarian syndrom) and ptc/ih. Other symptoms of the pcos are: weight gain, hirsutism (excessive hair growth - arms, face), weight gain for no apparent reason, irregular periods, - some of us believe the hormonal issues of pcos contribute to the ptc - It certainly would be worth further investigation - I have no idea what to tell you on the ear infections/hearing loss - although I've read in this group that some do suffer from hearing loss with the ptc - although I have not read where any drs agree  - but what is new about that??
Good Luck -
Denia

wiggyerin69 <wiggyerin69@...> wrote:
I need help on this question my daughter is 13 and has had ptc for some
time. She was now tols her insulin levels are high and ast levels are
low. Something that was never there. She also has sever ear infectionsa
dn partial earing loss in the ear of the same side that they saw a
problem for ptc. My question is does anyone have articles or
information regarding ptc and ear infections they are related somehow
and I need the article for that.

HELPPPPPPPPPPPPPPPPPPPPPP

Erin



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#27362 From: Daniel Mcneill <de_mcneill@...>
Date: Mon Feb 26, 2007 10:58 pm
Subject: Re: Long term Diamox
DE_McNeill
Offline Offline
Send Email Send Email
 
I can only reply - because they are clueless!! You do not have to have papilledema to have high pressure - I would say that your body has adjusted to the dosage of diamox and my no longer be working as well - My neuro put me through all kinds of migraine/headache/anti-seizure drugs to try to help alleviate the headaches but guess what- nothing worked! At least not for the long term - some would work for a couple of weeks and then stop - the majority I saw no improvement with at all! Good luck -
Denia

Brenda <bkmobes@...> wrote:
Sorry I've been away so long - just busy with life and not feeling too
badly. Until this past week - which has prompted this question. I
have been on the same dosage of Diamox now for 3 months. During the 3
months - my pain level stayed around a 2. Now for the past week - my
headache seems to be worsening. Could it be that my body has adjusted
to this dosage of Diamox - and is now needing more? I don't know -
just grasping here.
On another note - I saw my Neuro-optho last week - and she said since
the 'papilladema' is gone in my eyes - that she can now refer me to a
headache specialist. I'm like WHAT????? What part of this are they
not understanding. I don't have a migrane. I have a condition that
is causing me to have severe pain in my head. I've tried two
different migrane meds and they did nothing. Why would I need to see
a headache specialist?
Brenda



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#27361 From: "kiki" <kikijrfan8@...>
Date: Mon Feb 26, 2007 10:08 pm
Subject: Re: Spam and new web site
kikijrfan
Offline Offline
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Ok! First ! ALL I was doing was trying to help and second I am
developing a site that is more than just a group forum it will have a
lot more info attached to it. I have been here since I was diagnosed
in 2000 this is my new user name. I will quit posting in here about
the new site and those of you that wish to be informed of it please
send me an email at kikijrfan8@...

Sorry to have upset anyone that is not what I had intended. I was
just trying to start something that would hopefully take off. I guess
this is what I considered my part of trying to help and raise
awareness, and I also have spoken with IHRF and have told them what I
was doing and they told me to send it to them when I was finished and
they would add to their site.

I really didn't think that I was doing any harm by posting in here. I
guess I learned my lesson on trying to help!

As far as the moderators in here the email addys are all boucing is
the reason I started all of this. So to conclude. I will quit posting
here.


Thank you all for your info I appreciate it.




--- In ptc@yahoogroups.com, Anji <anjihar@...> wrote:
>
> I agree with Glen.  I don't post much but i read all the time and
have for overr 4 years now.  The biggest problem with this illness is
we are all ready spread out all over the internet.  I can think of at
least 5 other IH/ PTC boards off the top of my head.  When I started
a site for awareness (www.ihawareness.com) I thought about adding a
forum but decided there were already plenty of them.  If we ever ALL
get together and brain storm we might actually get some where in at
least raising awareness and maybe even money for research.  And I
hate to tell you but all the groups I have visited get spam, even
those moderated.  Even my awareness site gets email spam.  Its there,
just live with it and delete.  Angie H.
>
> chdblwinnr@... wrote:            Hi All,
>
>   Just my $0.02 worth.
>
>   With all the emails (and there have been many hundreds of them)
regarding the spam we have been receiving recently (I've been here
since 1999 and things have been much worse in the past and we've all
managed to move along just fine); I find that the endless emailing
about how horrible the situation is and the drastic measures that
need to be taken and how the moderators have disappeared (to my
knowledge they are still here by the way) and how a new site is
needed.........that this is WORSE than the piddly little spam problem
we've had. We know what the spam is (the titles are usually a dead
giveaway) and the handy dandy delete button works really well to keep
our computers free from it. I admit I don't who the people are who
have decided to break off and start their own site but the one thing
I DO know is that you are trampling the people who are staying behind
at this site. It would have been nice for you folk(s) to consider how
annoying it is for us to deal with the
>  barrage of emails you've generated.
>
>   I'm sure I've ruffled a few feathers but please don't bother
hitting me with the personal emails. I won't read or respond to them.
>
>   Glen  (the guy who appreciates everything that SheLi and Tracy,
et al. have done over the last 8 or 9 years)
>
>
>
>
> ---------------------------------
>   AOL now offers free email to everyone. Find out more about what's
free from AOL at AOL.com.
>
>
> **************************************
> AOL now offers free email to everyone. Find out more about what's
free from AOL at http://www.aol.com.
>
>
>
>
> I GoodSearch for Intracranial Hypertension!
>
>   Raise money for your favorite charity or school just by searching
the Internet with GoodSearch - www.goodsearch.com - powered by Yahoo!
> Be sure and put Intracranial Hypertension in the box as the charity
you want picked.  Thanks, Angie
>

#27360 From: jasmine flower <jasmine.here@...>
Date: Mon Feb 26, 2007 10:01 pm
Subject: Re:New Site Name ! IS this ok?
jasmine.here
Offline Offline
Send Email Send Email
 
Sounds good to me.  Thank you again for all your hard work, Kiki.
 
Wishing all pain free days,
Jasmine
 


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#27359 From: "wiggyerin69" <wiggyerin69@...>
Date: Mon Feb 26, 2007 10:00 pm
Subject: ear infections and ptc
wiggyerin69
Offline Offline
Send Email Send Email
 
I need help on this question my daughter is 13 and has had ptc for some
time.  She was now tols her insulin levels are high and ast levels are
low. Something that was never there. She also has sever ear infectionsa
dn partial earing loss in the ear of the same side that they saw a
problem for ptc.  My question is does anyone have articles or
information regarding ptc and ear infections they are related somehow
and I need the article for that.


HELPPPPPPPPPPPPPPPPPPPPPP

Erin

#27358 From: Anji <anjihar@...>
Date: Mon Feb 26, 2007 10:02 pm
Subject: Re: Re: Spam and new web site
anjihar
Offline Offline
Send Email Send Email
 
Dang brain.  I forgot to add.  At least give those of us that are not interested in moving to another group the courtesy of handling your new site threw private email.  Theres no reason the rest of us should have to see these emails over and over about what name etc.  Thanks, Angie

Anji <anjihar@...> wrote:
I agree with Glen.  I don't post much but i read all the time and have for overr 4 years now.  The biggest problem with this illness is we are all ready spread out all over the internet.  I can think of at least 5 other IH/ PTC boards off the top of my head.  When I started a site for awareness (www.ihawareness.com) I thought about adding a forum but decided there were already plenty of them.  If we ever ALL get together and brain storm we might actually get some where in at least raising awareness and maybe even money for research.  And I hate to tell you but all the groups I have visited get spam, even those moderated.  Even my awareness site gets email spam.  Its there, just live with it and delete.  Angie H.

chdblwinnr@aol.com wrote:
Hi All,
 
Just my $0.02 worth.
 
With all the emails (and there have been many hundreds of them) regarding the spam we have been receiving recently (I've been here since 1999 and things have been much worse in the past and we've all managed to move along just fine); I find that the endless emailing about how horrible the situation is and the drastic measures that need to be taken and how the moderators have disappeared (to my knowledge they are still here by the way) and how a new site is needed.........that this is WORSE than the piddly little spam problem we've had. We know what the spam is (the titles are usually a dead giveaway) and the handy dandy delete button works really well to keep our computers free from it. I admit I don't who the people are who have decided to break off and start their own site but the one thing I DO know is that you are trampling the people who are staying behind at this site. It would have been nice for you folk(s) to consider how annoying it is for us to deal with the barrage of emails you've generated.
 
I'm sure I've ruffled a few feathers but please don't bother hitting me with the personal emails. I won't read or respond to them.
 
Glen  (the guy who appreciates everything that SheLi and Tracy, et al. have done over the last 8 or 9 years)




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**************************************
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I GoodSearch for Intracranial Hypertension!
Raise money for your favorite charity or school just by searching the Internet with GoodSearch - www.goodsearch.com - powered by Yahoo!
Be sure and put Intracranial Hypertension in the box as the charity you want picked.  Thanks, Angie


#27357 From: Anji <anjihar@...>
Date: Mon Feb 26, 2007 9:57 pm
Subject: Re: Re: Spam and new web site
anjihar
Offline Offline
Send Email Send Email
 
I agree with Glen.  I don't post much but i read all the time and have for overr 4 years now.  The biggest problem with this illness is we are all ready spread out all over the internet.  I can think of at least 5 other IH/ PTC boards off the top of my head.  When I started a site for awareness (www.ihawareness.com) I thought about adding a forum but decided there were already plenty of them.  If we ever ALL get together and brain storm we might actually get some where in at least raising awareness and maybe even money for research.  And I hate to tell you but all the groups I have visited get spam, even those moderated.  Even my awareness site gets email spam.  Its there, just live with it and delete.  Angie H.

chdblwinnr@... wrote:
Hi All,
 
Just my $0.02 worth.
 
With all the emails (and there have been many hundreds of them) regarding the spam we have been receiving recently (I've been here since 1999 and things have been much worse in the past and we've all managed to move along just fine); I find that the endless emailing about how horrible the situation is and the drastic measures that need to be taken and how the moderators have disappeared (to my knowledge they are still here by the way) and how a new site is needed.........that this is WORSE than the piddly little spam problem we've had. We know what the spam is (the titles are usually a dead giveaway) and the handy dandy delete button works really well to keep our computers free from it. I admit I don't who the people are who have decided to break off and start their own site but the one thing I DO know is that you are trampling the people who are staying behind at this site. It would have been nice for you folk(s) to consider how annoying it is for us to deal with the barrage of emails you've generated.
 
I'm sure I've ruffled a few feathers but please don't bother hitting me with the personal emails. I won't read or respond to them.
 
Glen  (the guy who appreciates everything that SheLi and Tracy, et al. have done over the last 8 or 9 years)




AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.


**************************************
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I GoodSearch for Intracranial Hypertension!
Raise money for your favorite charity or school just by searching the Internet with GoodSearch - www.goodsearch.com - powered by Yahoo!
Be sure and put Intracranial Hypertension in the box as the charity you want picked.  Thanks, Angie

#27356 From: chdblwinnr@...
Date: Mon Feb 26, 2007 4:18 pm
Subject: Re: Re: Spam and new web site
chdblwinnr@...
Send Email Send Email
 
Hi All,
 
Just my $0.02 worth.
 
With all the emails (and there have been many hundreds of them) regarding the spam we have been receiving recently (I've been here since 1999 and things have been much worse in the past and we've all managed to move along just fine); I find that the endless emailing about how horrible the situation is and the drastic measures that need to be taken and how the moderators have disappeared (to my knowledge they are still here by the way) and how a new site is needed.........that this is WORSE than the piddly little spam problem we've had. We know what the spam is (the titles are usually a dead giveaway) and the handy dandy delete button works really well to keep our computers free from it. I admit I don't who the people are who have decided to break off and start their own site but the one thing I DO know is that you are trampling the people who are staying behind at this site. It would have been nice for you folk(s) to consider how annoying it is for us to deal with the barrage of emails you've generated.
 
I'm sure I've ruffled a few feathers but please don't bother hitting me with the personal emails. I won't read or respond to them.
 
Glen  (the guy who appreciates everything that SheLi and Tracy, et al. have done over the last 8 or 9 years)




AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.


**************************************
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#27355 From: "Brenda" <bkmobes@...>
Date: Mon Feb 26, 2007 6:04 pm
Subject: Re: New Site Name ! IS this ok?
bkmobes
Offline Offline
Send Email Send Email
 
that name works for me.  Because apparently that's all we will do -
is live with it -- I don't see any cures racing around any corners
any time soon!






--- In ptc@yahoogroups.com, jwtooblsd blessed <jwtooblsd@...> wrote:
>
> I am fine with that.
> --- kiki <kikijrfan8@...> wrote:
>
> > livinwith-PTC-IH.COM
> >
> >
> > This is the new site name IS this ok-- cus I will
> > register it and go on
> >
> >
>
>
>
>
>
>
>
_____________________________________________________________________
_______________
> Finding fabulous fares is fun.
> Let Yahoo! FareChase search your favorite travel sites to find
flight and hotel bargains.
> http://farechase.yahoo.com/promo-generic-14795097
>

#27354 From: "Brenda" <bkmobes@...>
Date: Mon Feb 26, 2007 6:02 pm
Subject: Long term Diamox
bkmobes
Offline Offline
Send Email Send Email
 
Sorry I've been away so long - just busy with life and not feeling too
badly.  Until this past week - which has prompted this question.  I
have been on the same dosage of Diamox now for 3 months.  During the 3
months - my pain level stayed around a 2.  Now for the past week - my
headache seems to be worsening.  Could it be that my body has adjusted
to this dosage of Diamox - and is now needing more?  I don't know -
just grasping here.
On another note - I saw my Neuro-optho last week - and she said since
the 'papilladema' is gone in my eyes - that she can now refer me to a
headache specialist.  I'm like WHAT?????  What part of this are they
not understanding.  I don't have a migrane.  I have a condition that
is causing me to have severe pain in my head.  I've tried two
different migrane meds and they did nothing.  Why would I need to see
a headache specialist?
Brenda

#27353 From: jwtooblsd blessed <jwtooblsd@...>
Date: Mon Feb 26, 2007 2:10 pm
Subject: Re: New Site Name ! IS this ok?
jwtooblsd
Offline Offline
Send Email Send Email
 
I am fine with that.
--- kiki <kikijrfan8@...> wrote:

> livinwith-PTC-IH.COM
>
>
> This is the new site name IS this ok-- cus I will
> register it and go on
>
>






________________________________________________________________________________\
____
Finding fabulous fares is fun.
Let Yahoo! FareChase search your favorite travel sites to find flight and hotel
bargains.
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#27352 From: "kiki" <kikijrfan8@...>
Date: Sun Feb 25, 2007 10:50 pm
Subject: New Site Name ! IS this ok?
kikijrfan
Offline Offline
Send Email Send Email
 
livinwith-PTC-IH.COM


This is the new site name IS this ok-- cus I will register it and go on

#27350 From: Jackie Whitaker <jackwhit44@...>
Date: Sat Feb 24, 2007 8:08 pm
Subject: Re: New poll for ptc
jackwhit44
Offline Offline
Send Email Send Email
 
I like #3 living with...

ptc@yahoogroups.com wrote:

Enter your vote today! A new poll has been created for the
ptc group:

NEW Site NAMES

o www.ihptcsupport.com
o www.ihptcguidanceforum.com
o www.livingwithptcih.com
o www.PTCIHliving.com

To vote, please visit the following web page:
http://groups.yahoo.com/group/ptc/surveys?id=2446842

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups - Join or create groups, clubs, forums &amp; communities.
web site listed above.

Thanks!



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#27349 From: Jackie Whitaker <jackwhit44@...>
Date: Sat Feb 24, 2007 7:57 pm
Subject: Re: Names for site --- Please give me your thoughts
jackwhit44
Offline Offline
Send Email Send Email
 
Hi Kiki,
I like #4 listed.  Welcome......
Thanks in advance for all that you are doing.  Please let me know if I can help in anyway.
Jackie

kiki <kikijrfan8@...> wrote:
Here are a few names that I have come up with for the new site tell me what you all think if you would please.
 
 
 
Benign Intracranial Hypertension (Pseudotumor Cerebri)       
 
I.H /PTC Forum or support board
 
PTC Learning to live with PTC or Pseudotumor Cerebri a forum for support and guidance.
 
Welcome to the new home of PTC guidance forum or group.
 
Life with PTC or Pseudotumor Cerebri
 
Living with PTC / IH
 
 
 
Thanks
Kiki


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#27348 From: Jackie Whitaker <jackwhit44@...>
Date: Sat Feb 24, 2007 7:50 pm
Subject: Re: It appears that the moderators have all gone away-- the emails are all bounce backs Soooooo.......
jackwhit44
Offline Offline
Send Email Send Email
 
Hi Kiki,
The spammers are taking over.  What a mess.  We need a new "space".  I'm electronically challenged, but would be able to help in any way.  All I need is instruction.  Bring it on!!!!!!!!!!!
Sincerely,
Jackie and Denielle with PTC

kiki <kikijrfan8@...> wrote:
Hello everyone,
 
I would like to introduce myself! I am Kiki, The reason for my message is that I would like to make a suggestion. I have done some digging and have found that the groups that are on yahoo the following groups are [PTC]  [ ptc-support-group] & [Pseudotumorcerebri] that are related to PTC all of the moderators have no working emails and it seems that no one is managing them and spammers are taking over.
 
I would like to start a new group that also has a website with it. I would like to get everyone's input on this. I don't want to do anything to hurt anyone's feelings. I just would like to keep a nice space for all of us to communicate! I really enjoy being able to talk to everyone.
 
So if everyone would send me an email back and let me know there thought I would appreciate it and I will get started on this right away and hope to have something in the next week ready to go.
 
this will be a site that WILL be monitored and managed!
 
Thanks and I wish all a pain free day.
 
Kiki
 
 


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#27347 From: Jackie Whitaker <jackwhit44@...>
Date: Sat Feb 24, 2007 7:47 pm
Subject: Re: New poll for ptc
jackwhit44
Offline Offline
Send Email Send Email
 
Yes!
Thank you!

ptc@yahoogroups.com wrote:

Enter your vote today! A new poll has been created for the
ptc group:

How would you like to see a NEW Group= Messageboard that has a site attached to it? I am considering starting a new site name PTC or similar with a messageboard right in it.


o Yes
o No
o Just new group
o Group on Yahoo
o Group on Google
o Group on Site with board

To vote, please visit the following web page:
http://groups.yahoo.com/group/ptc/surveys?id=2441936

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!



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#27346 From: ptc@yahoogroups.com
Date: Fri Feb 23, 2007 5:06 pm
Subject: New poll for ptc
ptc@yahoogroups.com
Send Email Send Email
 
Enter your vote today!  A new poll has been created for the
ptc group:

NEW Site NAMES

   o www.ihptcsupport.com
   o www.ihptcguidanceforum.com
   o www.livingwithptcih.com
   o www.PTCIHliving.com


To vote, please visit the following web page:
http://groups.yahoo.com/group/ptc/surveys?id=2446842

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups - Join or
create groups, clubs, forums &amp; communities.
web site listed above.

Thanks!

#27345 From: "jasmine.here" <jasmine.here@...>
Date: Fri Feb 23, 2007 4:13 pm
Subject: Re: meds vs. pressure
jasmine.here
Offline Offline
Send Email Send Email
 
I don't know much about the VP shunt as I don't have one myself, not
yet anyway.  I do however know about filing for disability.  I have
been attempting to get disability myself for well over a year now.
It is a long and tedious process and not something that happens
quickly (which is what one needs considering your bills don't stop
just because your sick and unable to work).  I have been denied twice
(which I am told is normal) and I have just completed the paper work
for filing for a hearing where I must go before the judge.  No
attorney or lawyer will help me with my case either *until* I have a
court date set which I am told will take another 30 to 60 days.  In
the meantime, things are very difficult as are yours.  The best I can
tell you is to take the advice on filing for disability and start
NOW.  If you do, don't give up on it even though it is extremely
frustrating (as is most of the things we deal with when having
IH/PTC).  Look to friends and family and people *here* for support
and feel free to vent.  I know and realize that most of the time it
is difficult for the people you live with on a daily basis to
understand how you feel and what you are going through.  But they do
love you and the people *here* care as well.  Please take extra
special care of you and your children.  And most importantly, don't
give up!  Hope this has helped in some small way.

Wishing you the best,
Jasmine

--- In ptc@yahoogroups.com, mary kadak <maylove143@...> wrote:
>
> My Doctor is good but there is not much he can do for is just when
the headaches get so bad and i start to vomit all the time he puts me
in the hospital for pain management i don't know if i would have been
worse with out the VP shunt but i don't want to find out.  But right
now it  is real hard for me due to being pregnant i some times feel
like i am not going to make it through this pregnancy.  i have a
young daughter who needs my time and i am working full time due to i
need to pay off bills since i have been out of work in the past 6
months i have only work 2 months.
>   But my doctor told me to go on permanent disability but we have
rent and other bill i don't think we would make it on my husband
check and the state disability money with 1 young child and another
one on the way.
>   It has also been taking a total on my marriage too. do to me not
feeling go and pain and he get upset and we start to fight.
>   all i do is live my life day by day.  I always tell my self when
i wake up in the morning i say let see were today will take me.  Most
of the time i have a hard time getting out of bed due to i wake up
with a headache and also my shunt are has been hurting a lot
>   please give any ideas you might have
>
> jwtooblsd blessed <jwtooblsd@...> wrote:
>           Hello, Iam sorry that ya'll are having so much pain. I
> had a VP shunt put in back in December and have no
> headaches. The neurosurgery group is listed #2 in the
> nation. I do have vision loss in my left eye, but I
> had that before the shunt.
> --- Brandie Leehy <brandieleehy@...> wrote:
>
> > I went through the same things. I have a VP shunt as
> > well. Still have horrible headaches sometimes. The
> > ER refuses to give me anything and calls me a drug
> > addict. I am so fed up with all this. I can't find a
> > doc who will give me anything stronger than vicodin
> > 5/500 and those make me vomit and do little for my
> > headaches. I asked my pain management doc for
> > something stronger and he started going off on me
> > threatning to take my vicodin away and leave me with
> > nothing because he doesn't prescribe anything else.
> > Real big asshole. Excuse the language. Just stressed
> > and fed up. I don't recommend a VP shunt. Some
> > might, but I don't. I am still just as misrable and
> > now I have a huge lump on my head, that I can't
> > sleep on, a tube going down my stomach that
> > shows(which prevents me from bending or stretching
> > backwards--it pulls), my hair is like 20 different
> > links from being shaved so many times and I am just
> > plain uncomfortable. I would take an LP over this
> > anyday. Also, all the meds
> > they give you for this have a tendency to give you
> > kidney stones and I already had past occurences and
> > I am a frequent maker, but they made me take them
> > anyway saying they would help(they only made it
> > worse and made me sound and act delusional and could
> > no longer taste carbonated beverages). After 17
> > lithotripsies and 6 stone retrievals, I now have
> > medular sponge kidney. So that is the path I have
> > traveled. Not saying you will but giving the heads
> > up just in case.
> >
> > Brandi- Illinois
> >
> > mary kadak <maylove143@...> wrote:
> > Yes i have went through the same thing for
> > 4 months i had lp's done once a week or once every
> > two weeks. it is hard. I even knew were to tell
> > the doctor to put the needle. now i have a vp shunt
> > put in i had the surgery on aug06 it helps but i
> > still get headachs but not as bad as they were. but
> > still get pretty bad. I am also 15 weeks pregnet
> > right now and and i have a 16 month old daughter.
> > it is hard do to i am getting real bad headachs.
> > Some times i can't left my head off the bed and now
> > i am working full time i had been in and out of work
> > i was hospitalize in dec06 for two weeks for pain
> > management and some times i still end up in the ER
> > for help with the pain i have
> >
> > francesreneeamos <francesreneeamos@...> wrote:
> > Hi everyone, I hope everyone is doing well!!
> > It's been a while
> > since I've been on the computer. I was having lp's
> > done every other
> > week for quite some time. My doctor had me on all
> > the meds and
> > everything for over a year now. I was almost at the
> > giving up point
> > because from what I hear is it never really goes
> > away.
> > A couple of months ago I stopped taking all the meds
> > to do a
> > little trial to see what my pressure was before and
> > after I quite
> > taking them. Nothing changed!! Can you believe this?
> > here I am
> > taking all these meds and they are making no
> > difference!!
> > I finally got a second opinion. I was told there is
> > NO reason
> > I should be on all these meds, and getting these
> > lp's done so
> > frequently if there is no change. I even tried
> > something else, I
> > waited 2 months before I went back for another LP.
> > Still no change!
> > Then I got an appointment with a Neurosurgeon. He
> > also
> > said "There is no reason for this much torture to
> > your body" I can't
> > believe my ears!!! Next week I am going to see a
> > Neuro-
> > optimologist. Almost a year and a half and I've
> > never even heard of
> > one of these docs. He said this doc will determine
> > whether or not I
> > really do have ptc. Have any of you been through
> > this??? I'd
> > really like to know if I'm not the only one going
> > through this total
> > shock!! Please let me know that ther really is HOPE.
> > Maybe I've
> > been misdiagnosed or something.
> > Ffrances in K.C.
> >
> >
> >
> >
> >
> > ---------------------------------
> > Don't get soaked. Take a quick peak at the
> > forecast
> > with theYahoo! Search weather shortcut.
> >
> >
> >
> >
> > ---------------------------------
> > Want to start your own business? Learn how on Yahoo!
> > Small Business.
>
> __________________________________________________________
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>
>
>
>
>
> ---------------------------------
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>  with theYahoo! Search weather shortcut.
>

#27344 From: jasmine flower <jasmine.here@...>
Date: Fri Feb 23, 2007 3:54 pm
Subject: Re:*****UPDATE****** ON site
jasmine.here
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Kiki,
 
Thank you, thank you, thank you for working so very hard on this for *all* of us.  It is delightful to have someone take charge to make this a better place.
 
So, again, I will give my two cents worth. 
 
I truly think that one of these two would be most appropriate simply because as I have previously stated, PTC is not always taken seriously (and we all *know* that it is a very serious condition to live with on a daily basis) as well as IH seems to be the up and coming new name that is given more credit.  Not only do those two factors come into play, but I also feel that there may be people out there who would be able to locate the new group easier because it would include both names in the title when perhaps they might be only familiar with one.  (I, myself, didn't know it was also called IH until about 6 months ago.) 
 
c.. www.livingwithIHorP TCsupport. com<http://www.livingwi thihorptcsupport .com/>
d.. or
e.. www.ihptcsupport. com<http://www.ihptcsup port.com/>
 
And as for the title,  again, I would like to see it contain both for the same reasons.
 
a.. Living with PTC/ IH support forum
 
Again, I thank you for taking the time to do this for us!  What a great job you are doing.
 
 
Wishing all pain free days,
Jasmine
 


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#27343 From: "Heather Millard" <hmillard@...>
Date: Fri Feb 23, 2007 2:59 pm
Subject: Re: *****UPDATE****** ON site
hmillard@...
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Hi Kiki
    My name is Heather and I would like to be included with any new site or groups. You are a real angel to roll with this. God bless you.
 All the best, Heather
----- Original Message -----
From: kiki
Sent: Thursday, February 22, 2007 11:17 AM
Subject: [ptc] *****UPDATE****** ON site

Hello All,
 
I hope everyone is having a good day!
 
I am still moving along on the new site.
 
Thank you all for the thoughts I have narrowed it down to this list
 
 
Then the title of the board will be
 
  • Living with PTC/ IH support forum
  • or
  • Welcome to the new home of Living with PTC guidance forum.
 
Please send me your input I really appreciate it!
 
I am really hopeing to get the site up and working by the end of the week!
 
this is if all goes well!
 
Thanks again
 
Kiki


#27339 From: Daniel Mcneill <de_mcneill@...>
Date: Fri Feb 23, 2007 4:15 am
Subject: RE: *****UPDATE****** ON site
DE_McNeill
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I agree - I like either of these and think including the IH is a great idea - Thanks for working on this for all of us!
Denia

Christine <mykidsmom@...> wrote:
Is there anyway you can add”/IH” to it?  IH is the “new” mostly used term for those diagnosed now.  I think it would be easier for them to find when they’re diagnosed that way.  I do really love the “living with” thing.  Because we really want to support helping people to “live” with this.  Unfortunately it’s not a short term thing!  IH is a lifestyle.  “Welcome to our world!  “L
You are doing an awesome job!
Christine

From: ptc@yahoogroups.com [mailto:ptc@yahoogroups.com] On Behalf Of kiki
Sent: Thursday, February 22, 2007 11:17 AM
To: ptc@yahoogroups.com; ptc-support-group@yahoogroups.com; Psuedotumorcerebri@yahoogroups.com
Subject: [ptc] *****UPDATE****** ON site
Importance: High
Hello All,
I hope everyone is having a good day!
I am still moving along on the new site.
Thank you all for the thoughts I have narrowed it down to this list
Then the title of the board will be
  • Living with PTC/ IH support forum
  • or
  • Welcome to the new home of Living with PTC guidance forum.
Please send me your input I really appreciate it!
I am really hopeing to get the site up and working by the end of the week!
this is if all goes well!
Thanks again
Kiki


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#27338 From: mary kadak <maylove143@...>
Date: Thu Feb 22, 2007 10:06 pm
Subject: RE: *****UPDATE****** ON site
maylove143
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i that that idea to living with

Christine <mykidsmom@...> wrote:
Is there anyway you can add”/IH” to it?  IH is the “new” mostly used term for those diagnosed now.  I think it would be easier for them to find when they’re diagnosed that way.  I do really love the “living with” thing.  Because we really want to support helping people to “live” with this.  Unfortunately it’s not a short term thing!  IH is a lifestyle.  “Welcome to our world!  “L
You are doing an awesome job!
Christine

From: ptc@yahoogroups.com [mailto:ptc@yahoogroups.com] On Behalf Of kiki
Sent: Thursday, February 22, 2007 11:17 AM
To: ptc@yahoogroups.com; ptc-support-group@yahoogroups.com; Psuedotumorcerebri@yahoogroups.com
Subject: [ptc] *****UPDATE****** ON site
Importance: High
Hello All,
I hope everyone is having a good day!
I am still moving along on the new site.
Thank you all for the thoughts I have narrowed it down to this list
Then the title of the board will be
  • Living with PTC/ IH support forum
  • or
  • Welcome to the new home of Living with PTC guidance forum.
Please send me your input I really appreciate it!
I am really hopeing to get the site up and working by the end of the week!
this is if all goes well!
Thanks again
Kiki


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