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@fdona58

I have had ET in the left hand since the early 90's. I was prescribed Metroprolol back then. Worked well until recently. Saw a neurologist about it in March of 2023. He diagnosed me with Parkinson's and said that the dr who told me it was ET was wrong. I had no other symptoms of Parkinson's ( no mobility issues or anything like that, just the tremor). Started me immediately on meds (Levocarbdopa). Didn't really work so when I saw him in June he upped the amount. Again didn't really work. Saw him in December, this time with a long list of symptoms. They matched with most of the same symptoms for Parkinson's except for the rapid cognitive functions decline (October to December) so I figured who better to see than the neurologist who first diagnosed me with Parkinson's. When I tried to tell him what I had been experiencing since October, he shut me down. He refused to even listen to what I had to say. All he kept repeating was "I am here for your tremor". After about 5 or 6 trys to tell him what I had been experiencing and him repeating the above, he asked if he could examine my left hand ( that's the one that had the tremor). I said "No, thank you" and walked out. It started me wondering if I actually had Parkinson's. This has sent me on a, so far 7 month journey, of seeing dr after dr, with each one focusing on only one of my symptoms instead of putting them all together. I spent the first 2.5 months trying to get a dr to listen to all of my symptoms. Many would listen to the first couple and then refuse to hear anymore unless I made another appointment. I even had a few who tried to walk out of the exam room as I tried to tell them my symptoms. I even had to be the one to ask for a referral to a specialist. Not once did they make the suggestion about seeing a specialist, except for one who suggested that I see a counselor. I finally got refered to a hospital clinic who was well known for diagnosing and treating cognitive impairments. He finally confirmed that I didn't have Parkinson's and gave me a preliminary diagnosis of Mild Cognitive Impairment caused by Lewey Body Disease or Alzheimer's and is doing more testing to confirm which one. Basically all I am trying to say is trust your gut. Seek out second opinions if you don't trust that the first one was right. If the dr doesn't really answer your questions or doesn't want to hear what you have to say, walk away and find another. It's your right as a patient.

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Replies to "I have had ET in the left hand since the early 90's. I was prescribed Metroprolol..."

My goodness! You have been through the mill, and back, so to speak! I sure can relate to the difficulties about getting the correct neurological diagnosis! It took my having a serious fall, resulting in a concussion, and blunt force trauma, where I froze in place, and fell like a stiff
board, and after 5 years, of progressing symptoms, that I was finally diagnosed with Parkinson’s Disease. Hang in there! Like the saying goes, ‘patience is a virtue’!