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.

[KeyRee]

For all those people who are not getting the treatment they know they need , here is a little saying I picked up from my cousin in Canada :

A SQUEEKY WHEEL GETS OILED

[KeyRee]

I get hiccup burps !

[KeyRee]

Hi there
Thank you for getting back to me so quickly . I don't think I have  Ehlers-Danlos as my symptoms don't seem to match up . I do have a problem with my CSF as it seems there is too much in my head and this is causing my pressure headaches.
Could you explain what retroflexed odontoid is ?

[KeyRee]

Pressure in the head
Headaches
Electric shocks [ can occur anywhere on body and makes you yelp ]
Buzzing in legs
palms of hands burning
Soles of feet buzzing
Face pain
TMJ
Fullness in ears
Shakes [ internal also ]
Double vision
Fatigue
Hips click
Shoulder click
Grinding in neck
Dull neck pain
Shoulder pain
Arm Pain
Clicking when swallowing
Painful neck glands
Chest Pain
Light sensitivity
Eye pain
Anemia [ may be due to not eating red meat as chewing starts face pain ]
Hair folicles hurt
Numb patch on scalp but hurts to touch
Walking like I'm drunk
Back pain [ especially lower back ]
Head nodding [ especially when relaxed watching tv ]
Sore tongue
Slow word recall [ especially nouns ]
Brain fog
Eye twitching
Cant keep eyes still even when eyes are shut
Sweating on any form of physical activity
Weakness in arms
Tinitus
White dashing dots in front of eyes when open
Chest Pressure
Weird Hic - cup / Burps [ sucking in air with face contorted like being sick  and then burping ]
Breathlessness
Involuntary Finger movements [ jerking fingers when hand spread out with palm upwards ]
Shins heating up like sunburn
Involuntary toe movements [ can't keep feet still ]
Pain between shoulder blades
Allodynia [ when you feel pain from something that should not be painful at all, such as a very light touch ]
Muscular pain / cramp
Sensitivity to loud noise [ producing an extreme startled response ]
Temperature extremes
Head sweats
oh and I thought I'd throw in ' Depression '
But then who wouldn't have that with all I have going on ;)

[Csly]

I don't know if these are related but I also have random numb spits near spine on occasion, reneuds, moving numbness across fingers and toes, feet that glow red for a long time after a warm bath, feet that get very hot at night ( no pain but the heat wakes me up) face that randomly flushes ( usually on or around ears and stays red for a while, recent tailbone pain when standing after any sitting strait in a chair, migraines mostly associated with barometric pressure in eyes and temples with next day neck pain, carpet burn looking rash on face that spreads and lasts about a week (cortisone cream helps some and I have had it twice Jan and Feb 2016) bout with b-12 insuffiency a year ago ( ( shots required)and now my bit d( level 16) and I also have Adult ( had as a child too) inattentive ADD and mild narcolepsy if driving for over 1 hour. Not sure what things are related and am unsure about what to mention to the dr because I don't want to be dismissed :/ just for info purposes I am 3years old, female, had total hysterectomy ( age 30) and am in a healthy weight range for my height. I take ADD meds, estrogen replacement and maxalt for Miagraine ( when needed) what do y'all think ??? Advice???

[Csly]

Also have hard time gripping things it makes my neves feel weird ( like a restless leg but in my hands when trying to open things, no fight or flight response, eye doc says the back of my eyes are wrinkly or that the veins are.dog like hearing and smell ( made worse by headache but can not smell and have no appetite for about an hour after waking up, intolerance and extreme pain in hands from touching anything cold, vivid dreamer almost every night, super duper tight hamstrings ( all my life could never sit with legs extended but can still sit on floor with knees bent out to sides and back and than lay back flat( not sure if that makes sense), can't remember the beginning of conversation half way in, eyes wander when talking to people or I go into dead stare mode at floor. Know the words to every song I have ever heard( live out the song as though I am that person ( guess that is vivid imagination)

[Art2509]

Symptoms I’ve gotten the past 6 months - Getting really sleepy. When I wake up I slur my speech. I’ve been told that if people didn’t know me they would think I was drunk. Dizziness. I’ve noticed that my right arm misses my wheel at times. It just drops off or misses the my manual wheelchiar wheel completely.

I also have a cold sensation on my face, a numb sensation around my nose and lips ( they are not actually numb). When I get really sleepy I also get some very strange tastes in my mouth. Sometimes salty, or sweet.

My doctor says it’s neurological but my neurologist says I need to see a dentist, change my toothpaste. And then he said that “Well you do have Arlnold-Chiari Malformation.

[selmaS]

  Hi and welcome to the Chiari forum.

*Stormy* is no longer an active member, but I will contact her to let her know someone is trying to make contact......

Chiari can be seen with a CT scan, but the MRI is more detailed as there can be other issues then just the herniation, retroflexed odontoid, and other issues .

Once u have the DX u will want to have more testing to determine if u have related conditions and then locate a true Chiari specialist to help guide u.

Know u r not alone, many of us  suffered for yrs trying to figure out what was wrong.

As for ur hips, that can be a related condition called Ehlers-Danlos that is a connective tissue disorder that allows joints to move in and out of joint.....

[KeyRee]

Many thanks for putting your list of Chiari symptoms on this website . I have had many of the problems you have listed over the last ten years . It's great to find someone who has so much in common with me especially the bit about your hair hurting , my scalp just seems so sore . You mentioned your face pain and I wanted to ask was whether it radiates from your throat area [ adams apple ] ? My throat clicks when I swallow and I get the fullness in the ears . I am as yet undiagnosed with Chiari but I had a CAT scan which showed I had Cerebeller Eptopica ; I read somewhere that to show Cerebeller Eptopica you would normally need a MRI scan as it's not normally visable on a CAT scan . I am waiting for an MRI and having a steroid injection in both my shoulders as I am having trouble with them and my arms . Does anyone else get their hips click ?