no dx, ALL the sypmtoms

[skrowe]

Hi, Ive been having symptoms my entire life, my entire 26 years every doctor has dismissed me as crazy or an attention seeker, and ive been told that to my face. My symptoms include: debilitating migraines (that come with bending over, exertion, lights, sounds, smells..to name just a few.) debilitating joint pains (from my toddler years), I have a curved spine (kyphosis, though not a single dr will acknowledge it, or even look into it even though its beyond visible and causes severe pain DAILY, among a slew of other issues.) I have tachycardia issues (think over 200bpm occasionally and it even happened IN THE DR OFFICE ONCE, and over 100 more frequently), chest pains, vision issues including blurry vision, hard to focus, near sighted, light flickers and 'dark spots' (not entirely sure how to explain beyond dark spots flying around in my vision), anxiety, depression, insomnia, bad fatigue with and without exertion, bad ringing in ears many times every day, minor issues with balance/coordination, but BAD clumsiness (i am not joking when i say i drop and break things daily like a child would), and bad vertigo, Ive got a gag reflex from hell, I always feel uneasy like something bad is about to happen, I have frequent if not constant bad sensations including (but not limited to) numbness and tingling in my entire body, often my face, I have problems with confusion and something called asphasia (cant find the right words, or its always on the tip of your tongue...this is actually pretty bad, this happens in most conversations i have every day.) random muscle spasms including my face and eyes, and frequent brain fog. The real kicker comes with the fact that my mom has all these symptoms as well BUT her symptoms only came after a car accident where her head went through the windshield (ive read this is possibly hereditary...and can only show symptoms after head injury)

I only heard of chiari recently when my mom actually found it online and brought it to my attention....my doctor immediately told me thats not what it is, she knows that (without any testing) because she has a friend who was dx'ed with it and she *knows* what its like. (Ive already determined shes not the best dr weather or not i actually do have chiari or anything related.)

She did order an MRI....ONLY of my brain.  No spine whatsoever, again, despite that giant curve thats not supposed to be there in the middle of my back.  Radiologist said it was normal, dr said it was normal, and she supposedly consulted a neurologist who also said it was 'perfect' and 100% impossible I have or will ever develop any Chiari or any related condition.  Ive read Chiari 0 cannot be ruled out without a spinal MRI.....wouldnt a neurologist know this!?

I am sending the MRI i did have to the Chiari Institute in Milwaukee WI, as I am located in WI as well. (I wont touch base on my worries about our insurance covering it IF they do decide theyd like to see me further)

Have others had these issues????? I know many dr's are jerks about chiari, but Im genuinely worried that since three professionals looked at my mri and it was "perfect" that maybe I *am* crazy and convincing myself of something I dont actually have.... I dont understand what else could cause ALL these symptoms....3 year olds dont make this **** up for attention...they dont even comprehend that idea.... but after being told for my whole 26 years of life that im just an attention ***** and dont have any medical issues at some point dont you start doubting yourself even?

[selmaS]

  Accept my friend request to send private message.

[skrowe]

Thank you, I tried replying but it says i cannot send you a private message? Do you know the best way to get in contact with that Dr? Thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

I and most of the members here know all too well that there are many Drs that do not know what Chiari is, and it is not the length of herniation which most use to determine a Chiari DX.....so, it is best to seek out the best informed and experienced Drs.....

That said we do have a list of Drs members have been to, treated by and liked..I will forward info into your inbox

Since Chiari has several related conditions ALL of those need to be ruled out as well as non related conditions like lymes, lupus and MS....they all have similar if not the same symptoms.

Hang in there it does get better in getting answers.

[skrowe]

Also was tested for lymes, but theres zero chance it could be lymes because the vast majority of my symptoms started when i was 3 years old. Id never been bitten by a tick til i was over 10. I absolutely understand lymes is a possibility still on its own, but it absolutely cannot explain or be responsible for most of my issues.

[skrowe]

I read the radiology report, it said literally nothing at all.  There is NO report from the dr about it, or the supposed neurologist she consulted.

[Jordanalanis]

also 'get tested for LYME disease

[Jordanalanis]

get your medical records and read the report. my hospital has online records, its best to do that. the dr office can help you set it up, anyways the drs told me everything was clear and nothing was wrong and the report actually said arnold chiari malformation but my neurologist said he didn't think it was causing my problems so he didn't mention it it happens to many people!