Parkinsonism Traits with No Diagnosis I’m Frustrated, Anyone else?

Hello @davemc and welcome to Mayo Clinic Connect. I appreciate you posting about the skin biopsy test. Some of the other members of the PD support group have also mentioned this test.

I look forward to hearing from you again. As this is your first post, please share a little about your journey with PD. What are your most bothersome symptoms, and how long ago did they begin? Have you begun any medication or physical therapy yet?

@hopeful33250
I am 73 years old and when I was 63, I was diagnosed with artery spasms that eventually required early retirement from working. (I was an oncology chaplain working in three outpatient clinics). March of 2025, I had a follow up with my cardiologist and during the visit a fellow he had working with him examined me and said, (Has anyone talked to you about Parkinson Disease)?"Four months later I was seeing a neurologist who diagnosed me in his office. He also scheduled the skin biopsy test. I had to wait about three weeks for the insurance to approve the test. After the test, it takes around 3 weeks to get result. Result was 95% positive. I was started on Carb/Levo 25-100 mg tablets, three times a day. Nausea was bad and additional 25 mg of Carbidopa was added which helped. Due to restless leg syndrome, Pramipexole 0.25 was prescribe for one week then doubling dose. Worked extremely well. Physical therapy is scheduled starting November 18th. It has been a whirlwind; however, my neurologist is right on top of this and I wouldn't want it any other way. My heart goes out to those folks that I am reading about who have waited and struggled to get the right diagnosis. I am finding the progression to be fairly rapid. Balance is bad, speech is getting blurred, cognition is confused. I have horrible dreams. I experience bouts of fatigue almost daily and after being active, it is difficult to accept that I am slowing down. Great support from family and friends. Thank you for letting me share and join this group of extremely brave individuals along with their caregivers.

@hopeful33250
I am 73 years old and when I was 63, I was diagnosed with artery spasms that eventually required early retirement from working. (I was an oncology chaplain working in three outpatient clinics). March of 2025, I had a follow up with my cardiologist and during the visit a fellow he had working with him examined me and said, (Has anyone talked to you about Parkinson Disease)?"Four months later I was seeing a neurologist who diagnosed me in his office. He also scheduled the skin biopsy test. I had to wait about three weeks for the insurance to approve the test. After the test, it takes around 3 weeks to get result. Result was 95% positive. I was started on Carb/Levo 25-100 mg tablets, three times a day. Nausea was bad and additional 25 mg of Carbidopa was added which helped. Due to restless leg syndrome, Pramipexole 0.25 was prescribe for one week then doubling dose. Worked extremely well. Physical therapy is scheduled starting November 18th. It has been a whirlwind; however, my neurologist is right on top of this and I wouldn't want it any other way. My heart goes out to those folks that I am reading about who have waited and struggled to get the right diagnosis. I am finding the progression to be fairly rapid. Balance is bad, speech is getting blurred, cognition is confused. I have horrible dreams. I experience bouts of fatigue almost daily and after being active, it is difficult to accept that I am slowing down. Great support from family and friends. Thank you for letting me share and join this group of extremely brave individuals along with their caregivers.

@teacher502 Thank you for sharing this excellent advice! Getting a diagnosis for one’s issues is such a frustrating experience. We all present in different ways especially while it’s early. While the journey may have similarities it will also have differences. My diagnosis was Aug 11, and it has brought me some peace for my “odd” symptoms. I cannot say it was a complete surprise, as my uncle had Parkinson’s, and my dad had Alzheimer’s; but it did take me a week or two to adjust and develop an actionable plan. I have prioritized a break from being poked, tested and doing any more research. I had already arranged most of my EOL stuff, so I am finally free to take a long needed vacation from EVERYTHING! I realize how fortunate I am to be able to do this. I don’t sweat the small stuff ( like the also recently diagnosed indolent lymphoma and ascending thoracic aneurysm). Friends tell me I have my smile back! I laugh a lot and am back to enjoying this beautiful world around us. Are there bad days? of course. But I am very grateful for what this experience has taught me. Today the sun is out, and I can hear the neighbors toddler giggling, it’s a good day!