No Diagnosis Yet

[rainbow215]

Boy, it seems like a lot of us have gone through hell just to get a diagnosis.

I still don't have a diagnosis (besides Fibromyalgia and IBS), but I've been experiencing all these strange Chiari symptoms for years. The neurologist refuses to send me for a brain MRI. He insists that my headaches are migraines (although the pain is in the back of my head not the side) and that the neck spasms are spasmodic torticollis. I asked him about Chiari malformation. He said that he's only seen two cases of Chiari in his 30 years of practice, so it couldn't be that. I guess that he has X-ray vision!


I am very frustrated and scared but I won't back down until I found a doctor who will help me. No one should have to live with such pain.

[Spaceystac]

We cry (even a little) and we get a headache
we laugh a little or a lot, we get a headache
you smile too much, you get a headache
  you throw up
  you cough
  you yawn
you get a headache
bend over too long
try to sing to a loud song
under florescent lights to long?
I will surely get a headache
Why so painful, why so often, mri says there is nothing
my vision is blurry and i get dizzy often
how can they say that there is nothing?
They say its a rebound headache, or chronic migrane's
they give you meds and temporary relief.
but in the end, we still wind up in grief,
When will it stop, where is the end,
When will my doctor get me on the mend?
in the mean time, we must learn to cope
and hold on the the little bit of our remaining hope.
that there will be a cure or even more treatments
but unfortunitly health care has a few dirty secrets
if you don't have insurance or are a bit poor,
you will likely find your self at a slamming door
no where to go for help
no one really seems to care
I have no dianoses, I want to pull out my hair
I want to scream, I want to cry
I want them to hurt, sometimes I want to die
but all this leaves me with yet another headache so I have to ask myself why?
Do things have to be, the way that they are
why does everything have to be so hard?
maybe one day we will know
with a diagnosis, we could show.

[zygy2]

If you suffer from cough headaches that is a really good way to get an MRI because unless you are older these headaches usually require an MRI to rule out problems with the brain.  I would see another Dr. and just keep going, it is a long frustrating process but someone should eventually listen.  Cough headaches were my ticket to an MRI because I did not fit the profile of who should have them and how often, I could not get laundry out of my dryer without inducing one or even laugh!  

[momof3gr8kids]

Hi, hang in there!  I too am in the same boat.  I have been at this for over a year.  I just recently found this forum and it has really felt good to know we are not alone.  I am on a new quest this week in hope to find help too.  Don't give up.  Good luck.

[selmaS]

  Hi and welcome to the Chiari forum.

Good for u!! It is sad that we have to be our own advocates to get the proper care we need, but we do....so change Drs and keep pushing for the MRI....


Too many Drs can not see the zebra in the roomful of horses...

       "selma"

[lgarcia7712]

I'm not sure what type of insurance coverage you have, but if at all possible I would switch Dr. Or at least seek a second opinion. This condition is serious and misdiagnosed.