Welcome to the Pain Management Forum. There are no physicians on this forum. Some of us have a medical background but we are far from experts.
You are correct, Diabetic Neuropathy is more prominent in extremities. However and unfortunately Diabetic Neuropathy may effect any of our Peripheral Nerves. This includes the nerves in the skull (cranial nerves) or nerves from the spinal column and their branches. Why this occurs in some individuals and not others when most everything is equal is still a debate. We do know that ppl with higher or uncontrolled levels of sugar in your blood steam are much more apt to develop Diabetic Neuropathy... as are ppl that have have had diabetes for years.
What I hear you most frustrated with is the actual diagnosis....you are not convinced that this is the reason behind your symptoms. We know our bodies better then anyone else. If you are dissatisfied with the diagnosis then seek another opinion....and another...until you are comfortable with the diagnosis.
Obviously no one on the internet can offer you a better diagnosis then a physician who is examining you and has all the test results at hand, including your history. We do have Physician lead forums. If you click on the word forum in the blue banner on the top, left hand side of this page you will be able to select from a number of other forums.
I wish you the very best and hope you will find better answers. We know how very frustrating it is to search for a diagnosis. My heart goes out to you. Please let us know how you are doing. I will look forward to your updates.
Thank you your name seems familiar so I think you have written to me before...you are so right there is nothing more frustrating then not knowing what is wrong with you.. I have also been told it could be Fibromyalgia, Oseoarthritis it's so scary not knowing what is causing all these crazy symptoms somtimes I think it could be MS. I know it attacks the nerves and muscles in my body because my muscles stay tight all the time....to the point that it feels like something is crushing me....I will keep you posted and let you know if i found anything different...