Hi everyone!
So I finally got an earlier appointment with my neurologist or what ever she is as I been so bad lately and guess what I’m cured. Well at least that’s what she made out. :S
I’m so confused.
So I got good news, the swelling behind my eyes has gone down from the medication I am on. But now that means I’m on it for life. So boo to that!!
So I was like ok now what you’ve realised its not the raised intracranial pressure causing my symptoms. Then what is?
And her answer was…
Your a migraine sufferer…
And her solution was-- to put me on more medication.
What I feel like is not because I’m a bloody migraine sufferer. I can tell you that. And its there on my reports I have a Chiari Malformation. But oh I forgot. Its asymptomatic!!!
And I asked her everything and she brushed me off. Its like as I’m 20 she thinks I don’t have the right to question her. What’s that about?
I’m actually praying that these new tablet don’t work so I can go back and say you were wrong. Does that make me selfish?
I’m high all the time as it is. More meds is just fuelling the fire.
Sooooooo bloody stressful!!! And I started throwing up 3days ago and she didn’t seem to care.
Argh I’ve had enough…
i dear god, what the hell, it makes me mad the way doctors think they know it all, well cured, thats amazing, maybe will all should see her, we all would be cured, the thing that she should of known that is, THERE IS NO CURE,
i dont think that makes you selfish, if it was me, i wouldnt even bother with them and then tell her that they didnt work, lol
my thoughts are with you, its hard enough to deal with chiari, but to have a doc tell you crap, its not on,
is there anyone else you can see?
did you ask her what she knew about chiari and wether she has had dealings with this before? and then ask her to send you to someone else for a second opinion.
dont stand there and put up with that shit, you deserve better,
age has nothing to do with it,
it makes you just want to print info about chiari and shove it in their faces, and say READ IT, (you know its proberly be the first time she read info about chiari)
keep me posted, im here for support when ever you need it, even to yell and vent, dont hold back girly, i understand it, and ya know what it sucks
WOW… were you in the room when I recently seen my neurologist… Because it sounds like exactly what she said to me… She told me My chiari was cured… Not acted like it… But said it outright… Had to clinch my teeth when she said it… According to her My MRI doesn’t show or note anything regarding my Chiari… Not even the hole in my head… or anything else regarding it, so since they didn’t note it… It’s not there anymore… WOW… I had MAJOR brain surgery and now its amazingly disappeared… And my headaches (PURE PRESSURE) Are migraines… and she thinks they are being caused from me not sleeping well… I am agreeing with her to a certain point. Because i know lack of sleep can do strange things… But uggg… She just keeps adding new med’s… Ones that I can’t afford after my insurance renews But will give them a try for a few weeks… She added nortriptylene back about a month ago, now as of yesterday, she has me still taking the nortriptylne and has added lunesta… (which has some CRAZY side affects) I feel like I am taking back steps instead of forward… I know that I have high pressure I can FEEL IT!! my headaces are NOT strictly from my other issues… There is pressure there, and I hate when these know it all dr’s don’t listen to a word being said…
I am sorry that we have to go through this… Hope that one of finds some relief soon… All I can say, is I remembered why I stopped going to dr’s.
dont give up, it can take a while but one day there will be one brillant doc who wants and cares about you, you just have to weed of the bad apples first,
the only good thing i can think of, with all this know it all doc, is the records that they write stuff on, everything goes into a database, and sats are done on illness and such, that hopellyin ten yrs they will know more and actually help people, it sometimes make me feel better, to think that crab we are going though is helping the ones in the future, i KNOW it doesnt help with how we all are treated, but in away it gives me piece,(kind off)
DOC’S NEED TO LISTEN TO US, WE KNOW OUR OWN BODIES,
my gp is good i just walk in and tell him what tests i want, he doesnt ask why, he just sends me, if i can afford it i will go private, and if i cant i get put in the public systom,
got hard when i suddenly lose my spelling.
but then we have to convence the specialist to do them…
My own experience has been negative as far as neurologists are concerned. The ones I have seen were useless as well as uneducated in Chiari. I refuse to go to another NL…I did find a good Neuro-Opthamologist which is well versed in Chiari.
Anyway…PLEASE go to someone else…Carla mentioned seeing a Neurosurgeon. Now that would be a good route to start with…bring the MRI along with your symptoms and list of meds the neurologist put you on.
Sad, but true, most of us had to see way too many docs before we got real answers. Don’t give up,ok??
Right at this moment its 1.46am I’m unable to sleep again. I’m nauseous have a headache and feel dizzy. And she fuels I think by the medication. Cos I don’t eat I think it makes me throw up now god danm it!
How do u go about getting a copy of your MRI?
Jolene we do know our own bodies and I said to her I don’t feel as I use to. I don’t feel right. And she didn’t listen. Bloody joke she is.
Am going to my gp on monday going to ask her for another referral!!!
it is a joke, ive just changed my NL, my last one told me it was all in my head, he was right on one aspect, IT WAS IN MY HEAD, but phyically, fool he is,
good girl for not giving up, after i saw my last NL i was going to give up, then 3days later i got angry and went back to my GP who sent me to a surgeon,
the surgeon is sending me back to NL but ive requested another one,
you fight for your right, you matter so give going, has hard as it is, but you will get the answers and a good doc sooner or later,
your mri copies go to your GP, you can ask for a copy from them,
here in nz we have everything sent to GP, you dont normally have copies from the tests you get, unless you have payed private,its amazing how different it can be
and she didn’t seem to care.
god danm it!