Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[geebug]

@Selma, I'll have to do some more research on EDS. I've heard of it, but I don't know a great deal about it.

@sweetjen, I can't help with finding the article, but I can tell you that I personally have trouble controlling my temper sometimes. It's really frustrating because I know I'm overreacting to things, but I just can't stop.

[sweetjen680]

Are you the Carolyn that has a blog?  I saw a link on a blog by someone named Carolyn about an article written by Dr. Oro.  It was about how cerebellar dysfunction could cause rage.  The link doesn't work.  I am looking for some strong  "scientific evidence" regarding what can happen to a chiarians ability to control their temper when symptoms are bad.  TIA, if you can help.

[selmaS]

  Hi....I do not have the soft teeth issue, but I did see  teeth issues as a problem for those with EDS bcuz of gum disease....if u have EDS along with ur chiari that may account for that...they r related conditions.

[geebug]

I already thought from reading the official symptoms this might be what's causing all my trouble. Now I'm just about convinced.

There are so many things that I always thought were just me. Like the shopping thing. I always thought I just hated grocery shopping!

I've seen nearsightedness and other vision issues mentioned. I've had horrible eyesight for years. When I was about 6 the ophthalmologist said I could only see about an arm's length.  Now it's about four inches. I started seeing floaters several years ago, and after seeing a couple of specialists, they decided it was because of retinal scarring. They also told me that was why my left eye was worse than my right. One of the specialists also discovered that my pupils don't constrict properly. That was something they'd never seen before, but they weren't terribly concerned. Does any of this sound famine to anyone?

And while I'm asking about these things, does anyone else have trouble with their teeth? Mine have always been really soft. I always had lots of cavities even though I always brushed my teeth like I was supposed to. Had to have two root canals when they took my braces off because mt teeth just fell apart. They'be been a nightmare ever since, chipping and breaking, no matter what I do. That might be completely unrelated, but I figured it was worth asking.

[sherimom]

My son has one that they say is migraine related, but it always comes up when his chiari symptoms are bad.

He sees a blinding white light and describes it like someone put a white sheet in front of his eyes, he can't see anything but white for a few seconds, then it goes away. He feels slightly "off" for a couple minutes afterwards.

Sherimom

[selmaS]

  So true and I feel it is up to us to help get the info out there to help get that knowledge from infancy to adult status....lol...