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Parkinsonism Traits with No Diagnosis I’m Frustrated, Anyone else?
Parkinson's Disease | Last Active: Oct 29, 2025 | Replies (25)Comment receiving replies
I am Joe and recently signed up with Mayo Connect and have read some of your comments on how hard and long it is taking to get a diagnosis for Lewy body dementia with Parkinson. I have a family history of dementia and for some time had been experiencing some symptoms. The first symptom was active body dreams and some cognition issues. My neurologist at Chapel Hill UNC hospital in NC diagnosed me with 2 tests. One was a skin biopsy and also a lumbar puncture. They were test for my genes because of my family history. I don't have specific details referencing the tests but would be glad to get them from my doctor if anyone interested.
Joe46
Replies to "I am Joe and recently signed up with Mayo Connect and have read some of your..."
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Hi @massee01 - welcome to Mayo Clinic Connect. I'm glad you personally got some answers, and I appreciate your interest in helping others streamline the process to getting a diagnosis. I think a long and winding journey to a diagnosis is hard on everyone. It delays any treatment, psychological adjustment and/or treatment, logistical planning and more.
If you could post in this discussion the names of the tests you were given that gave you a definitive diagnosis with Lewy body dementia with Parkinson, I think that would be helpful for other members.
If I understand correctly, these are tests for those who have a family history of this disease or similar? If you have any information on eligibility/ suitability for these tests, that would be great.
Also, massee01, when were you given your diagnosis? How are you feeling about it?