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Is it Parkinson's or not?
In March, my neurologist did an assessment of some odd symptoms I've been experiencing, including a very slight tremor in my left hand, feeling like I'm swaying when I turn, unusually vivid dreams that I physically react to, and a stiffness in my upper mid back. (I also learned from the exam that my left arm doesn't swing very much when I walk, while the right is an enthusiastic swinger 🙂 When she finished the exam, she bluntly said, "You have Parkinson's." Needless to say, I was stunned. She said that PD has always been a clinical diagnosis, but that there are tests that can be done to help assess it, mentioning both the DaTscan and a skin biopsy. I opted to start with the scan. It came back inconclusive. The left side of my brain indicated a reduction in dopamine activity, but my symptoms are all left-sided, so the right side should be affected. The right side looked completely normal. She said that she believed that "the overall study was somewhat equivocal - meaning it doesn't give us a clear or definitive answer either way." That's when I asked for the biopsy, the Syn-One test. The process of getting that approved and done took four long months, and then another month waiting for the results. Guess what - entirely NORMAL. The neurologist said that it is unusual, but a normal biopsy doesn't mean that I don't have Parkinson's. She is quite committed to her clinical assessment. I should add that my UPDRS score is only 11. I'm in the very early stage of the disease, if I have it at all.
Has anyone else had a normal Syn-One and a relatively normal DaTscan and still developed full-blown Parkinson's Disease? Thanks for any insights you can share.
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I, too, was diagnosed with PD while living in retirement in Brazil 8 years ago. Having been a Vietnam vet and a Marine stationed at Camp Lejeune (contaminated drinking water lawsuit for PD and many other afflictions), I returned to the States only to find I'd lost a good chunk of my Social Security (I never planned to return to the U.S., so the Soc. Sec. Department withheld a year of my payment and deducted 10% of my Social Security for each year that I lived outside of the U.S.--not paying for Medicare Part B, which is useless outside the country.) The first neurologist I saw, as a cash customer since I wasn't getting my Medicare for my first year back, said he was 99-percent certain that I had Parkinson's Disease. And he was a highly respected neurologist. When I finally settled down and was able to visit a VA hospital, they set me up for a DaTscan, which came back negative, and then a skin biopsy--inconclusive results. I was then pretty-much told to "get lost." I'd had tremors for about twenty years prior to returning, and had trouble walking, was unable to get in and out of a car or bed, so I continued seeing neurologists through Medicare with differing opinions, but no specific diagnosis. Finally, eight years after first being diagnosed with PD, I saw the head of the neurology department at Stanford Medical, who told me that I had Functional Neurological Disorder, also known as Conversion Disorder. The symptoms vary greatly and doctors are reluctant to give this diagnosis. Neurologists sent me to psychologists and psychologists told me to see neurologists; and on and on it went. Neither discipline would take responsibility for giving any specific diagnosis. I'm now working with physical therapists and exercising regularly. I have a healthy diet, a loving wife to back me up, and I'm through with seeing doctors unless some part of my body is broken. I'm still living with my Parkinson's symptoms, and fortunately they haven't gotten much worse. And my spirit isn't broken. Although I no longer depend on the VA for assistance, they do tremendous work for veterans who live in some regions; in others, especially rural areas, they simply wait for the older Vietnam vets to die. For too many vets, it's a sad state of affairs--losing their homes (purchased on the GI Bill to foreclosure due to a reversal of support by the current administration), having their healthcare cut drastically, feeling deeply betrayed, and even losing all hope. I'm moving forward and although I'm no longer able to drive a car, I stay active, working with other veterans at a grassroots level of all political ideologies and ideologies to come together to stop privatizing the VA, a ruse to siphon money up the line. That's the lone governmental agency that our government (Congress, Executive Branch, and high-level officials) is afraid of agitating in any way. They're going after every other government-related group except the Veterans Administration. There are as many as 18 million veterans in the U.S. We are a force that can fight to protect our civil liberties and due process. I hope you get the care you need to stay as healthy as possible. You'll likely experience disappointment, but stay strong and be your own advocate.