Like you, we had many diagnoses over several years, many doctors, many meds, many ideas -but the problems persisted. Finally, we went to Mayo Clinic in Jacksonville. Initially, after many tests over a period of 3-4 days, they told us my sweet hubby most likely had mild cognitive impairment with a high probability of Lewy Body Dementia. (We were shattered and at the same time thankful for an answer - even though it was one we didn't want.) In time, as more symptoms appeared, the Lewy Body became the official diagnosis- and our hearts were relieved and broken at the same time. Now, four years later, I know they are right.
What I want you and others to realize, is that even with many doctors from many specialties and all sorts of costly tests, some of these diagnoses are hiding and just waiting to magnify themselves at an unknown time. I feel like you will get the answer you need in time - and you will be both relieved and possibly sad.
If I were you, I would look at my bucket list and try to make some of those things happen and try to stay focused on what I can do now. Take a break from doctors and tests if you can. And, if you have not been to Mayo Clinic, you might want to give that a lot of thought. We will always be grateful for the help they have given us over the years. They have access to doctors and research from all over the world....even now, when my hubby can no longer travel, the team of professionals continues to support us with encouragement, knowledge and compassion. Please let me know how I can help. My heart senses your fear and your frustration- and hopes the best for you in your life.