Questions about neurologist, muscle spasms

I have a neurologist appointment scheduled for next Wednesday. I'm kind of nervous as I'm not sure what to expect. The initial person who read my MRI said I don't have Chiari. Even though I have almost every symptom and everyone I've shown them to can clearly see overcrowding in the images. But since it doesn't extend down, they said I'm fine in that regard. They did find other abnormalities though, which is why they are having me see a neurologist. I am expecting no help or support - I guess because I know most neurologists don't listen or believe you when things are not right with your body. One example of that is my mom, who suffered with Chiari for more than 20 years before she was diagnosed, always being told there was nothing wrong with her.

Are there certain things to say or ways of saying them that any of you have found makes neurologists listen better and take you seriously? Should I fill out any checklists or anything and take them with me?

In addition to everything I was already dealing with, I have begun having leg twitches periodically over the last few months. And now I'm in the 4th day of constant toe spasms. I know it sounds weird but my little toe on my left foot never stops twitching. It is very visible, and I feel it constantly. I go to bed with it twitching, and wake up with it twitching. I feel like I never get a moment of peace. Anyway, I was just wondering if this could be related to Chiari - I know I've heard about the face twitching and stuff but I wasn't sure about it in extremities like legs and feet. If anyone else has dealt with this and found things that help make the muscles relax and stop twitching, PLEASE share them with me. It's driving me crazy.

Thanks for reading :)

Bananas, if you got a Chiari diagnosis from an NL I would be very (pleasantly) surprised. I am not aware of the magic touch, tone, or line of questioning to use with these guys- i always seem to fail! NLs can be useful for ruling out other pathologies though. I would expect to have a thorough neurological exam done too, including a check of your reflexes. Bring a list of ALL of your symptoms and a list of questions too. Keep this in mind during your appt…symptoms are not caused by the size of herniation- it’s amount of crowding and blockage of CSF flow that causes symptoms. A good NS will take into account a cine MRI, symptoms, and neurological findings. Best of luck in your appt!