Still a mystery :( So hopeless.

A few questions. Long story short Ive had issues with my head huge pains that go to the top of my head and other symptoms..have seen about 4 nuerologist and have had many MRIS and CTS the most recent was just in july. Nothing came back abnormal though. My symptoms are facial pains, tingling in my face and extremities, my face hurts sometimes to make certain facial expressions...hurts to strain using the restroom. I have not seen a chiari malformation specialist but I am beginning to think that it is something different. This is going on 2 years as the symptoms started with my lips and cheeks tingling.


I have noticed a soft spot on the top of my head, and went to the neuro about it, he said that the Fontanelle closes up around 18 months and issues that are congenital would show as a young adult. I am now 21 years old. I also have pain on my forhead where my headline is my bones are soft to the touch ( not that I should even be pressing on them lol )....I have vitamin D and vitamin b12 deficiency.

My question is even if it is rare is there a disease or disorder that would cause the bones or skull to change or sounds ridiculous but divide without injury? I have no clue why I am in so much pain. I have seen a rhuemetologist which did not find anything either. Wouldnt MRIS show these types of things...My Neuro said a bone scan is not necessary :( and that Its nothing.