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

@SusanEllen66 The only sumptom I had for several years was increasingly greater fatigue, that became so bad that I wass completely bedridden. This disease has to definitive test; there are other dieseases that minimck but they have different treatments so if they misdiafnoses you with PD and gave you l-dopa it wuldn't cure your diease; it would only mask it. BUT ALL THAT SAID I played "Bet you cant' diagnose what i've got and was eveluated 4 times times by the nerurology departments in those hospitals. NONE of them came up with a firm diagnosis. However, the last one, (Which has veen rated as no 1 by the US World anad News Report in their annual reviws of hsopitals and other medical failities throughout the world, )which is the same rating s the Mayo Clinic -- reached the same conclusion as the previous 3. BUT the doctor at No 1 hospital told me he wanted to just try one more thin. He gave me an L-dopa and came back in 1 hour. It was like a Miracle. Truly I could walk and and do things that I hadn't been able to do in years. I was wweak because i hadn't erally moved in several years but got over that when I put put on a regular routine (and I am now using the l-dopa pump which is FANASTIC. If The only shred of thing that pointed to Parkinson'd. I suggest that you find a neurologist who is willing to do a one time test - gie you the standard exam where they pull on your arms and you resisst, they hit you on the knee with the rubber hammer, allthat stuf then give you a pill, wait an hour, and do those exact same things agaii abd see what happens. Technicaly I have Idiopathic Parkinsons's disese The long term for that its "We-tested-her-for - all-the-other-diseases- and ruled-them- out-bhe- only has the fatigue symptopmp we gve her a 1 L-dopa pil ll so and it worked so we're just going to treat her like a PD patient and sww wher it goes. And it's ben going for 3 years now - still no definitive test but it's wowrking for me. I wouldn'dt say to skip all the otgher testing but when you've don it all and still don't have an asnewer try that one test my dr. at Charite Berllin did- take a pill once and see what happens. The onther part of that test was to withhold L-dopa and see what happens. Wasn't my favorite part of the whoe t hing but almost as soon as they did that part of the test, I returned to OFF-Landia in about 4 hours. So I clearly do have PD. Just get someone to try that. If nothing else, it will be another bit of data for them to consider. I hope you have my good luck ith th is! But I assure you, you don't want to pass up this opption It saved my life and I definitedly would have been dead if that doctor hadn't tried that 1 pil

@jatonlouise that is amazing!
I am glad you are getting the help you need.

@SusanEllen66 It truly is amazing. I am very, very fortunate to have landed in the hands of very good, caring, persistent doctors and so. If I gotta do the PD thing, I'm doing it with a lot ob the very best help one could ever hope to have.

I was diagnosed by taking a DAT Scan. It will tell you positively whether you have Parkinson's or not. From what I understand it was expensive and the insurance company Was reluctant to approve it But they finally did.