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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


hi, i totally feel for you cause i understand completly what you are going through and the sad thing is theres prob thousands in the same situation.and your right,in this day and age we shouldnt have to fight for years for a diagnoses,its ridiculous.
yes mine started 9 years ago after being hit on the head with a stilletto heel!!!! it was an accident! first just thunderbolt headaches,then it just progressed over the years with all the other symptoms,but i dont get the blue toe thing that you do..that sounds scary,what does your doc say that is then??? i saw 2 neuros and rhematoligist years back,they couldnt find any reason for arm and leg pains,and the neuro was just a waste of time and after being told to see a shrink it totally crushed me, that was 5 years ago so i just resigned myself to thinking maybe it was in my head and just live the next 5 years without going back to my gp.i paid at bupa 5 yrs ago for my mri as neuro wouldnt even let me have one!! it came back clear. was last summer
that ive got worse so looked into it as ive always wandered bout chiari but did nothin about it until a lady on theses boards gave me some great imfo and encouragement,i checked my scan against others on the net and then tried to email it to specialists. tci is the only one who answered me.
my scan is the old fashioned way so i scanned it in to my computer but im hoping to get a copy of my new one on disc,i think you can save the image to your computer then access it that way to attach it to an email.
but from all my research a neuro who specalises in chiari will understand borderline chiari even one in england. i found my nearest one using the ann conroy website.if you go on there you can find one near to you and that would be cheaper!!! but your doc should just refere you anyway,its no skin of thier nose...they just being akward!! my doc wouldnt send me to specialist but armed with my email from tci he did recommend to the neuro to let me have a new mri,my neuro took copies of my old scan also and hes taking both mris to a big radioligist meeting with him! i know thats sounds like good news but i still expect the same answer...nothin wrong!!!
but if i was you i would find nearest specialist here in england first,and armed with your reports demand to be refered,i cant believe your doc wont do that,he must be so mean!! if he refuses then go above him,then he will have no choice,hes not qualified to say the reports you have are rubbish.

im hoping for my results next wk and need to get a disk copy like you have to check myself!!!! but i wont be happy until i see a proper specialist.
my herniation is exactly on the line so it doesnt actualy desend but like you the cerebellum is squashed to my skull which looks like to me no room for csf flow but when i had my mri last wk i asked radioliguist to check for that on new mri and he said to check flow you need another sort of scan not mri.
this is a long post ..sorry but its good to speak to someone not so far away in the same situation!!! not that id wish this pain on anyone!! and no i dont work,i do some volunteer work 2 days a wk but id struggle with a full time job plus i have children to look after also. im only 32 but i feel like 50!! i have never been ill in my life until this happened,ive now started to get stomach problems which i wander if could be chiari related also as docs dont know whats causing them either!!! i think im falling to peices ha ha
ill see if i can find a specialist near to you,its worth a shot before you bankrupt yourself in new york!! id love just to to TCI but no way i can afford it!
do your family support you or do they think you are bonkers too!!! mine just seemed to agree with the docs and think im obsessed with my head,i always joke that when i die i want I TOLD YOU SO on my grave stone,cause i will prove them all wrong!!!! xx
im the same as you,good and bad days ,i live on pain killers also,but i also suffer in silence cause nobody wants to be friends with someone whos ill all the time and my other half puts up with so much i feel sorry for him,i really try not to complain when i hurt and get on with it but somedays i just cant!!!





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