Daniel,

Thanks for your reply and encouraging words.My neuro is a consultant in a general hospital and he has a huge team of other neuros (less senior) working for him who do the ground work...at first it was hit and miss when i went in,who ever was there would perform the tap and there was always problems getting in for treatment on time as there is a huge space problem in hospitals here and so i would spent weeks harrassing the hospital trying to get in! after a while (and a lot of terrible taps!) i got a great neuro and i would call him directly and arrange to come in to see him in the ER but now he has moved into research so i am in the process of trying to sort something out as of course the new team are even worse than ever....one doctor performed a tap and the pressure measured normal (although i'm not sure how accurate he was) and there and then he told me my PTC was gone....just like that it had suddenly dropped!! he said we would do one more to be certain but that in his opinion it was gone and what do you know...it wasn't!

Anyways i would advise you to carry on hassling your doctor,i believe a major part of managing this is regular taps.Maybe next time you get a tap,before you leave you could speak to him about this,i know i can tell myself how long each tap usually lasts me.Keep a log of it and after a while you will see a pattern and you can show your doctor.

Sorry i know this message is rambling and confusing!But i hope i can be of some assistance!

take care

Kathy/Ireland

Daniel Mcneill <de_mcneill@...> wrote:

Hello Kathy,

I believe stress can bring on those symptoms again - and I know that my brain and memory are just a portion of the functionability(no such word I know but!) that I had prior to the ptc - I know also that the diamox made my mind muddled as well and so did the topomax. I have to write things down a lot! way more than I ever did before - I used to have an awesome memory - I am a teacher and have to make a lot of adjustments. There have been times when I am unable to recall a student's name for the life of me - I know that I know them, that they should be in my class but have no clue WHO they are. I have also experienced this with information - and especially word recall - sometimes (usually) the simplest words will escape me - like not know the word HAT - I can describe one, know where it is worn etc but have no clue of the word -

My neuro gave me the impression that the memory issues would clear up once my levels were normal - and I guess to an extent they did but it ISN"T what it was before -

How do you get your neuro to schedule regular taps? Mine will only do one if I"m in agony and beg for one - it didn't use to be that way but over the last year he has reallyl changed - he used to be the one to return my calls and had no problems believing my symptoms - seemed to feel I knew my body best - but now it is like he just doesn't want to be bothered. I have an appt. tomorrow to get a referral to a different neuro -

I don't know if what I've said has helped you at all - but know that there are many of us here who can relate to what you are going through - always feel free to vent or ask any questions - that is why we are all here!

Let us know how your appts go and don't give up!

Denia/Texas

geoghegan79 <geoghegan79@...> wrote:

My name is Kathy,iam 26yrs old and have had PTC for about one and a
half years now i was diagnosed in May 2004.Since then my life has
been
turned upside down and still now every day is a battle, even though
i
must add that my case is not the worst compared to what i have read..
I am on Diamox and for the moment it is working, i have had problems
in the past and tried other meds but have had to come back to the
Diamox and for now its managable.I have had 15 Lumberpunctures to
date
and been on a weight loss regime!
My Pressure seemed to be improving my last LP was in September and i
am not due for another until December (this was major progress for
me!)
But a few weeks ago i started college and since then i am getting
bad
again, i am so sick, all the symptoms are creeping back, i feel like
i
am hanging on to each day by my fingertips!
I just don't know what to do i feel like i have some enemy inside of
me that's trying to rob me of my life!
I know i may sound extreme but i'm just so tired ,so exhausted of
this.
Most of all i hate that this is an "invisible" illness,to look at me
i
seem fine and i feel that i constantly have to"prove" or remind
people
just how sick i am!
Thank you for this space,it is precious,i have never spoken to any
other person who is going through this,i am really glad to meet you
all!!
kathy
P.S: My memory and mind are half of what they were-i feel like my
head
has mush for brains!Does anyone have any tips for dealing with
mental
deficiances associated with PTC?
It has taken me over 1 hour to type this!!

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