Hello @romeo2020,

I have read your detailed posts and I can tell that you have put a lot of effort into finding a cause for your unique symptoms. I would begin to say, that while I'm not a medical professional, I have had a lot of health problems that have been difficult to diagnose and therefore treat. My history (though not my symptoms) was similar to yours in that I saw a lot of different doctors for what appeared to be a neurological disorder and everything appeared normal. Like you, I was also referred to a psychiatrist who said that I did not have any psychiatric problems but that I did present with a neurological disorder. (My neurologist then stated that a psychiatrist was not a neurologist and therefore was not qualified to make that kind of statement 😊).

Fast forward several years and many doctor appointments later and I was finally diagnosed with a rather atypical Parkinson's disorder. I don't look like a person who has had Parkinson's for over 20 years but when I started taking the meds for PD my symptoms abated quite nicely.

I'm not sure that you mentioned seeing an endocrinologist. These are doctors who know all of the body systems in a way that most physicians don't. They are excellent in helping with hard-to-diagnose problems. It is important to see a top-notch endocrinologist. Perhaps someone associated with a multi-disciplinary health system like Mayo Clinic (or at the very least) a university medical school. Is it possible for you to come to the U.S to be seen at Mayo Clinic? (They have three locations in Florida, Minnesota, and Arizona).

Just a few more questions: Any vestibular problems like balance? Any foot-dragging? Any vision problems? I see that you have not had an MRI of the spine. If so, please be aware that MS lesions can present on the spine, but not on the brain. Also, has any neurologist suggested a lumbar puncture?

All of this to say, don't give up on a diagnosis. Neurological problems are very, very difficult to diagnose. As I was told, over and over again, when I was going through this process, sometimes you don't get a diagnosis until things get much worse (not a very comforting thought I would admit). My diagnosis came when I began falling.

I look forward to hearing from you again. I urge you to keep researching and persisting. It will eventually pay dividends. Will you post again?

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