what's your story?

[lu7997]

I am new here and I would liek to get to know everyone.  If you do npot mind I would greatly like to hear your stories.  This is very hard and I am learning it isn't something unique to my experience.  My family and friends all think I am faking and crazy cause I had specialists tell me it was nothing serious yet I am still insisting on more .

I would greatly like to hear your stories and get to know each of you.


thank you for sharing
Angie

[jibjen]

Hi lu,

I'm JibJen. I am fairly new and undiagnosed but have been recently going through MRI's and just starting to go through more tests. (I just don't know for what yet) i am working on getting some answers from my neurologist at my upcoming visit. my last few MRI's mention the word MS but it has been left unspoken..
I also have experienced migraines and my doc likes to use that as my label.

It is very nice to meet you. I have never heard of Chiari. I will have to learn more about your situation, although I can understand and sympathize with you on the headache piece.  I hope you get some answers.
This forum has been a great support to me (God Bless them as I know I can sometimes just babble along in some of my posts) It's nice to know you have a place to go where people will listen (read) when you feel like you are not being heard or just need to let loose or simply chat... (Thanks Everyone!)

I look forward to hearing more about you and learning about your progress.

Be Well!

Jib Jen

[supo_uk]

There is huge controversy that CD isnt even a recognized condition:

http://www.richardwebster.net/freudwrong.html

And, I have to say the careless way CD is used by lazy neurologists to fob patients off makes me think that Webster may be on to something.

[MrsAristotle]

Hi I found this information about Chiari after car accident it seems to fit with your symptoms.

http://www.mlnlaw.com/2009/07/chiari-malformation-after-car-accident.html

I cannot believe anyone would think you are depressed or suffering from conversion disorder you dont fit.

http://en.wikipedia.org/wiki/Conversion_disorder

Its too easy for doctors to just label us as depressed or anxious.

Yes we are depressed and anxious because we are ill and NO ONE KNOWS WHY.

I hope you see the neurosurgeon soon and get some answers.

Your not alone believe me.

Are you taking any medication to help you with the symptoms?

No need to be sorry you are here and that is all that matters. Let us hope we can support you through your journey and it wont be a long one waiting for a diagnosis.

Big hugs Mariaxxxxxxxxxxx

[lu7997]

I was in a car accident in may.  Shortly after I was hit I had the worst headache I have ever experienced in my life.  as the months past the headaches continued and worsened they never actually went away just varied in severity.  I then started having dizzy spells and vertigo and if I would cough, sneeze, laugh, or strain in anyway I would get visual disturbances and possible blackouts.  I was told I could no longer work since I have to drive 300 miles a week.  I had a ctscan which revealed a chiari Malformation.  My PCP had me get an MRI to confirm and it showed the herniation was only 4mm which the neurologist would not diagnose as a Chiari and said I had migraines, when that didn't work he said is was post trauma syndrome, and possible depression and/or conversion disorder.  By this time I am now having ringing in my ears, pain to the point of wanting to passout, nausea, numbness and tingling in my hands and toes, weakness on my right side, and constant black spots in my visual field.  The neurologist now says it could possibly be a chiari and referred me to a NS and signed off my case.  

In a nut shell that is where I am in this torture of trying to get my life back , get relief, and get a doctor to believe that I am not just after drugs.

I will read that post I am sorry I did not realize it was there : )

[MrsAristotle]

Hi Angie perhaps you could start by telling us more about you, what is going on, how you feel, etc.

There is a thread on here which allows everyone to introduce themselves, perhaps you could take a few minutes to read about us all (well more than a few minutes LOL so get a cup of coffee ready before you start LOL).

Yes it would be good to know what is happening with you so that we can support you better. Big hugs Mariax