I used to make symptom lists for my doctors every time I visited them. I'm not sure how much good it did, but I felt like I was doing my best to get their attention, and helping them not have to rely upon their notes. I would recommend everyone to do this, especially with new doctors.
I just posted my symptoms as a response to a post at my support group. I thought, since I did that, that I'd paste them here:
My craniocervical instability symptoms are:
* Top of head pain and feeling that my head is pressing hard on my neck.
*Daily my head feels too heavy and I have to lie down.
*Occipital pain that can radiate over ears to eyes.
*Slight balance problems
*Cognitive dysfunction, but could be due to MTBI (mild traumatic brain injury).
*Tremors in fingers and jaw
*Very diffuse weakness
*Pain and change of sensation in hands
*Sleep changes: I have abnormally high events of "unexplained arousals" (wake up for no reason) during sleep, meaning not too much deep, REM sleep.
*An intense feeling of being "Neurologically off"...I've not yet found the words to describe it
*Pain suboccipitally when biting down/chewing/yawning/sneezing/coughing/laughing/crying.
*Breathing difficulties: forced shallow breathing and a sensation like my diaphragm is sticking and when that happens, I can't breathe.
*swallowing difficulties in that food and pills can take a really long time to "go down."
*Lancinating pains (Get-your-attention stabs of pain that go directly, immediately to the brain, happens on feet and in arms, mostly).
*If I work or something using my arms, I get very bad neuropathic itch.
*occasional myoclonus, muscle jerking
* Loss of knowing where my feet and hands are positioned
* L'Hermittes if I am in a certain position and cough or sneeze.
I have other symptoms, that "could" be due to tethered cord, or the trauma to my upper C spine (?)...I read online once that if you are injured high enough in your Cspine, you can have lower extremity symptoms. So, I'm not sure.
*Painfully weak legs
*Change of sensation in feet
*Burning in hips/thighs/calves/feet at night upon need to urinate
*Frequent urination (at least 10x per day, about 3 x per night)
I was told that I do have pressure on brainstem from odontoid (part of the C2), due to my skull rotating backwards due to instability post injury.The back of my skull rests on the posterior of my C1.
These are the main ones that I can think of right now.