Need more details. . .

truebeauty, it is so important to know your body. You are so wise to attempt to come to terms and ask others about similar health experiences concerning what’s associated with this disorder. You can learn much about the symptoms online. And I hope that many will come onboard to share their own personal stories. No person can tell you whether you’ve been misdiagnosed but a qualified doctor or specialist. And this is because, as you say, confusing to a lay person; it’s just a very confusing illness to deal with on your own—scary, too. I encourage you to have a complete health examination. Tell the doctor about your chief complaint (dating back as far as possible); expect a lot of specific questions; ask a lot of questions; tell of all medications; lab tests/scans/MRI/PET/CAT; developmental test; psychological assessments/evaluations; bring past medical records; tell about social history (jobs, family, drinking, drugs, sexual activity, exposures to chemicals or toxic substance; tell anything that's intensely personal and very stressful; this is all important in determining your illness and how it can be treated. Another important matter is to observe you. You need to be able to be able to report accurate information so you can further help your doctor and yourself. Make sure to find a skilled authoritative doctor, and be very familiar with any prescription(s) drugs prescribed, and any problems you encounter while taking these medicines. There is so much more that can be told, but this will give you a good idea of what to use while looking for proficient medical help. Best to you!

Very informative, thank you.