Aa
bad mornin already..
mornin..
well after yet another doctors appointment yesterday which left me feelin there wasnt any point in it.. i really am goin round in circles. he had a feel of me head n neck watever good that did - i told him i ent tiltin me head backwards though ( and i never ) in enough pain n discomfort already. i didnt get no where with him - n then he asks 'is that ok?' i was like ''well ive got no choice have i!'' i said to him if this is cus of pressure then tabs ent guna help me, that this is gettin worse and its constant! - hes reply 'you sure you takin those tabs' i said yes but ent doin anythin, ent even hittin the sides' basically ive gotta wait til october for some help hopefully!!
to make me even worse i only hit me head off the side of the kids metal bunk bed last night as well, nearly knocked meself out, it sent sharpe pains down me spine as well. bloody hurt! this mornin ive woke up feel numb down my left side, with pins n needles / tinglin in my arm n fingers (left side only though) although me right hand does feel weird. me neck is hurtin, my bottom of head is hhurtin and me back is killin me - im jus lyin here in bed wonderin if i can master gettin up - with the kids askin me ;wen we gettin up; sometimes i feel like sayin -wen mommy can get up.
ive never had this pain/achiness for sooo long before n it is makin me worry! i cant believe how the docs/hospital etc hav been though to keep me danglin on a string with no proper answers or anythin! these people are meant to be helpin us yet they hav a funny way of showin it.. leavin us to get on with life when somedays its jus soo hard - for me most days are hard. the only plus side is i havent had a fit since my head / neck / eyes so its been 4weeks. but honestly id take havin a seizure over this anyday.. and that must show how bad im feelin at the minute.
anyway rant over.
emza
well after yet another doctors appointment yesterday which left me feelin there wasnt any point in it.. i really am goin round in circles. he had a feel of me head n neck watever good that did - i told him i ent tiltin me head backwards though ( and i never ) in enough pain n discomfort already. i didnt get no where with him - n then he asks 'is that ok?' i was like ''well ive got no choice have i!'' i said to him if this is cus of pressure then tabs ent guna help me, that this is gettin worse and its constant! - hes reply 'you sure you takin those tabs' i said yes but ent doin anythin, ent even hittin the sides' basically ive gotta wait til october for some help hopefully!!
to make me even worse i only hit me head off the side of the kids metal bunk bed last night as well, nearly knocked meself out, it sent sharpe pains down me spine as well. bloody hurt! this mornin ive woke up feel numb down my left side, with pins n needles / tinglin in my arm n fingers (left side only though) although me right hand does feel weird. me neck is hurtin, my bottom of head is hhurtin and me back is killin me - im jus lyin here in bed wonderin if i can master gettin up - with the kids askin me ;wen we gettin up; sometimes i feel like sayin -wen mommy can get up.
ive never had this pain/achiness for sooo long before n it is makin me worry! i cant believe how the docs/hospital etc hav been though to keep me danglin on a string with no proper answers or anythin! these people are meant to be helpin us yet they hav a funny way of showin it.. leavin us to get on with life when somedays its jus soo hard - for me most days are hard. the only plus side is i havent had a fit since my head / neck / eyes so its been 4weeks. but honestly id take havin a seizure over this anyday.. and that must show how bad im feelin at the minute.
anyway rant over.
emza
COMMUNITY LEADER
Hi...sorry u r still not feeling well......
Hang in there.....I hope the letter helps u get the info u need.
"selma"
Hang in there.....I hope the letter helps u get the info u need.
"selma"
hey ya,
i started writin it when ya gave me the link, but im useless at writin letters, was guna go back to it but ive been really sufferin lately not done much of anythin jus wanna curl up n hide. im still feelin crappy but ive told meself today is my day no matter who s**t im feelin im guna write all my letters i need too - once ive made a cuppa that is! :-)
i started writin it when ya gave me the link, but im useless at writin letters, was guna go back to it but ive been really sufferin lately not done much of anythin jus wanna curl up n hide. im still feelin crappy but ive told meself today is my day no matter who s**t im feelin im guna write all my letters i need too - once ive made a cuppa that is! :-)
Emz, did you write to the medical records place yet? I think the sooner you see Dr Bassi the better darl, you need someone who will listen and give you answers, does not sound like your going to get that from your local surgery.
thanx for that selma.
my recently new doctor has already told me when i asked abut chiari. hes words was ''chiari is an accidential finding and very rare'' i thought you should go onto my forum im on then youd realised how rare it is the ****! ggggrrr.. docs jus get me annoyed. i jus feel like i cant handle this pain / feelin much longer, im tryin so hard to get on with everyday things but everythin feels sooooooo hard! i wanna be strong really i do but i feel soooo weak.
my recently new doctor has already told me when i asked abut chiari. hes words was ''chiari is an accidential finding and very rare'' i thought you should go onto my forum im on then youd realised how rare it is the ****! ggggrrr.. docs jus get me annoyed. i jus feel like i cant handle this pain / feelin much longer, im tryin so hard to get on with everyday things but everythin feels sooooooo hard! i wanna be strong really i do but i feel soooo weak.
COMMUNITY LEADER
HI...I know those mornings u r talking about...no fun.
Not sure I would want a seizure tho...never had one.....but I get where u r coming from.
Keep in mind chiari symptoms can and do cycle...so u may be in a flare, that will eventually calm down...hopefully soon I pray.
But, it also does seem at some point the flares last longer and get stronger, then u know u have to get to a chiari dr.And that is the problem most of us have...we go to our drs thinking they know all about chiari when they do not! They get 5 mins of conversation on the topic in med school and either forget it or feel it is gospel for chiari when in fact it was all out dated info.....until we make more strides in awareness and research some medical minds will not change...chiari is an incidental finding and nothing more.
It is sad, and when u have a dr like this u know u need to find a new one ......
Hang in there...I pray ur day gets better : )
"selma"
Not sure I would want a seizure tho...never had one.....but I get where u r coming from.
Keep in mind chiari symptoms can and do cycle...so u may be in a flare, that will eventually calm down...hopefully soon I pray.
But, it also does seem at some point the flares last longer and get stronger, then u know u have to get to a chiari dr.And that is the problem most of us have...we go to our drs thinking they know all about chiari when they do not! They get 5 mins of conversation on the topic in med school and either forget it or feel it is gospel for chiari when in fact it was all out dated info.....until we make more strides in awareness and research some medical minds will not change...chiari is an incidental finding and nothing more.
It is sad, and when u have a dr like this u know u need to find a new one ......
Hang in there...I pray ur day gets better : )
"selma"
thanx for your comments.. well its after midday - dragged meself out of bed, to feed the girls (they not back til monday - roll on til then)
popped the shop with me sister though - she drove. hehee. popped into me moms on way back and there was a letter from the QE. ive got an appointment for my EMG n nerve conduction on the 27th september - shittin bricks as i hate needles ( my veins are harder than hard to get and a fair few bad experiences) but still they wont be lookin in the right place if i do hav this CM.. gggrrr..
my head/neck/back and everythin else still the same and my hands feel weird, cant really explain the feelin ive been left with.
i told meself id do the house work today as been slackin a little, i dont feel in the mood to do it but its gotta be done. im already wishin it was bedtime!
god - id giv anythin to feel normal again. it real is hard work jus tryin be act normal like theres nothin wrong and we can concore the world, to act like we are able to do anythin but my truth is - even housework seems hard work. liftin me head back n forwards makes me head worse. up down the stairs makes me go light headed and dizzy. im stoppin like every 20/30mins cus like fooked.. i feel like im a 90yr old.. when im only 28 nearly.. is this how my life is guna be from here on out, will it get worse - answer to that i think so! :-(
how are you two both gettin on? sorry for my rant though! im jus feelin fed up n sick of my pressure pains.
popped the shop with me sister though - she drove. hehee. popped into me moms on way back and there was a letter from the QE. ive got an appointment for my EMG n nerve conduction on the 27th september - shittin bricks as i hate needles ( my veins are harder than hard to get and a fair few bad experiences) but still they wont be lookin in the right place if i do hav this CM.. gggrrr..
my head/neck/back and everythin else still the same and my hands feel weird, cant really explain the feelin ive been left with.
i told meself id do the house work today as been slackin a little, i dont feel in the mood to do it but its gotta be done. im already wishin it was bedtime!
god - id giv anythin to feel normal again. it real is hard work jus tryin be act normal like theres nothin wrong and we can concore the world, to act like we are able to do anythin but my truth is - even housework seems hard work. liftin me head back n forwards makes me head worse. up down the stairs makes me go light headed and dizzy. im stoppin like every 20/30mins cus like fooked.. i feel like im a 90yr old.. when im only 28 nearly.. is this how my life is guna be from here on out, will it get worse - answer to that i think so! :-(
how are you two both gettin on? sorry for my rant though! im jus feelin fed up n sick of my pressure pains.
Oh Hun,
Hang in there and try to stay relaxed... difficult yes, but do try,
Like you im on this journey but no fits with me. I have been experiencing severe pain, both legs,back and neck for the past five weeks, have had days where i can hardly walk, I now cant control my pee first thing in morning and have no feeling in my lady places!!!! alongside this my balance is total crap and somedays i cant even coordinate to eat with my cutlery, im covered in bruises cos im so bludy clumsy. I experience the most awful sensation that travels down whole right side of my body ad wont let me sleep, I get fatigue when walking the dog, and have been to do weekly shop today.. and am suffering now.
My new symtom is nausea to the point of wretching but nothing comes up, really dont no if this is related to swelling they have found.
I spend most of my days feeling like the local p..s head. Im now on the priority list for mri of brain, c-spine and csf flow but there is a 6 week waiting list.
You are not alone sweetheart, stay strong and positive and dont let it consume you.
Take care huni and thinking of you.
Niki x x
Hang in there and try to stay relaxed... difficult yes, but do try,
Like you im on this journey but no fits with me. I have been experiencing severe pain, both legs,back and neck for the past five weeks, have had days where i can hardly walk, I now cant control my pee first thing in morning and have no feeling in my lady places!!!! alongside this my balance is total crap and somedays i cant even coordinate to eat with my cutlery, im covered in bruises cos im so bludy clumsy. I experience the most awful sensation that travels down whole right side of my body ad wont let me sleep, I get fatigue when walking the dog, and have been to do weekly shop today.. and am suffering now.
My new symtom is nausea to the point of wretching but nothing comes up, really dont no if this is related to swelling they have found.
I spend most of my days feeling like the local p..s head. Im now on the priority list for mri of brain, c-spine and csf flow but there is a 6 week waiting list.
You are not alone sweetheart, stay strong and positive and dont let it consume you.
Take care huni and thinking of you.
Niki x x
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