Hi NJ, is your Neurologist a movement disorder specialist? My first neurologist was convinced it was "just RLS" even as my tremors progressed from my leg to my entire left side. The movement disorder neurologist took me more seriously and spent a lot more time listening and observing my movements. It felt good to be taken seriously.

I think I was 3 years into seeing Neurologists before I had a DatScan that came out "normal". A year later, my MDS finally diagnosed PD. Faking symptoms is called "Psychogenic". I was accused of that as well. Like I really want PD!!! I can't fake sleep apnea, insomnia, incontinence, Dystonia, REM behavior disorder and cognitive issues, just to name a few. You know your body, and they don't!

I read something recently that said people with PD are actually the doctors when it comes to meeting with your neurologist, and the doctors are actually the students. Made so much sense to me. One thing I've learned is that EVERY PD patient has different symptoms, which makes the whole disease so frustrating.

I truly believe that Parkinson's is a disease that most doctors still don't understand. Symptoms can start 10+ years before diagnosis, and there is still no "concrete" evidence (that I've seen) that can guarantee a 100% diagnosis, without a postmortem exam.

If I don't have Parkinson's, then I want someone to tell me what the H*** is going on! I can't go from a perfect life 5 years ago; only to have to deal with daily fluctuations of every symptom imaginable that suddenly turned my life into a miserable existence. Some have blamed depression? Yes, I have it, but why didn't I have it the first 47 years of my existence, and what prompted it to become so unbearable in a short matter of time? So many questions, and so few answers.

Good luck to you. I would appreciate updates as you continue your journey.... We are here to help each other!!

@A MyParkinsonsTeam Member - I found this article that is not to technical and may shed some light on your question. Sending healing thought your way.

From https://www.parkinson.org/blog/whats-hot/update...
DaT test is over-used in clinical practice, and is only FDA approved to distinguish potential Parkinson’s disease from essential tremor. In fact, the test only tells the clinician if there is an abnormality in the dopamine transporter, and does not actually diagnose Parkinson’s disease (could be parkinsonism). PET is also overused, though it can be a more powerful diagnostic tool when in the right expert hands.

If you have already received a diagnosis from an expert, and are responding well to dopaminergic therapy, in most cases of Parkinson’s disease, PET and DaT scans would not add any new information, and may prove unnecessary. In cases where the expert is not sure of the diagnosis – is it essential tremor or Parkinson’s, for example-- or where a potentially risky procedure is being considered (e.g. deep brain stimulation surgery), it is reasonable for your doctor to recommend a PETscan or DaTscan. It is important to keep in mind that PET and DaT scans should be performed only by experienced neurologists who have executed a large volume of Parkinson’s disease scans, because experience is important in accurately reading the imaging results. One important update is that DAT scans can and have been misread since the FDA approval in 2011. The reason DAT scans can be misread is because the interpretation is performed entirely by the eye (there are no hard numbers to make the diagnosis). This type of “qualitative” interpretation is subject to error. We always recommend that the interpretation be performed in the context of the clinical symptoms of the patient, and when in doubt to get a second opinion from a Parkinson’s expert.

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A MyParki...

I suggest a movement specialist/neurologist. Mine is great! knows PD inside out! answers all my questions and is up on current trends.

I had an MRI to help with my diagnosis.I had a row of dead cells on my brain. I had just had hip surgery and that is most likely what happened when I was put to sleep. My Neuro DR also did a needle test on my arms and legs. He inserted those LONG needles about 12" long spaced all the way down my side (He just put them in a short way,but it did hurt).He said if the needles rocked back and forth 6 times or more, it was a true sign of PD. Some of them did rock like crazy on the right side only., so I guess it was right. I only have PD tremors on my right side.. Before any of the tests were done, my right thumb and index finger would rub together, he said that was the 1st sign of PD. Hope you do not have it