How long did you have symptoms before being diagnosed with PD?

Where I am coming from is something I read somewhere that in the medical system as we know it, 5-7 years is a typical length of time to get a diagnosis of a complex or lesser known condition.

I googled and found there are only 700 board certified movement disorder neurologists in the USA.

Can that be true? I have read frequently in forums like this one that people are diagnosed and treated for PD by providers who are not specialists. You really need a specialist for almost any ongoing or chronic illness; generalists (like a general neurologist) or a primary care doc simply don't know enough. So there must be a lot of people who are not properly diagnosed, or who receive inadequate treatment.

Maybe it was in these forums I recall someone telling their story, they were diagnosed with PD by a primary care, who was averse to ever sending patients on to specialists, and tried to treat most everything themselves. So that patient did not get what he/she needed. That solo approach just leaves patients with inadequate or wrong treatment in my opinion.

One of the biggest problems in diagnosing Parkinson's and other neurodegenerative diseases is the commonality of symptoms with a variety of diseases - including age related decline in function. I'm a retired Acute Care NP and looking back I had symptoms of neurodegenerative disease for years before putting all the pieces of the puzzle together. For instance - bad dreams with some acting out of dreams was attributed to work and personal stress; slow gut with GERD and irregularity attributed to irritable bowel syndrome; being unable to smell the turkey cooking at TG and not being able to smell a pot of barbecue simmering attributed to "just getting older. I never even mentioned these problems to my PCP until I read about REM Sleep Behavior Disorder - while investigating my bad dreams. That explained my violent outbursts and hitting my husband in my sleep - ABNORMAL and indicative of future development of Parkinson's or a like disease. I also suffered from bouts of near fainting in the heat - again attributed to dehydration and advancing age. Then I started investigating the other symptoms of PD and was increasingly concerned that I fit the profile and got a referral to a neurologist with Movement Disorder training who confirmed a diagnosis of Primary Autonomic Nervous System Failure and likely early PD. On meds to treat low BP and help with gut issues - otherwise monitoring and trying to exercise regularly as recommended.

@southwest
I am in Canada and I truly do not understand the many comments here about how long it took to get a diagnosis. It seems it is primarily Americans saying it took several years and a DAT scan. I went to my GP about my hand tremor, he sent me to a neurologist who I saw 6 weeks later. In 15 minutes, after watching me walk and checking my hand movements / strength he concluded I had PD and put me on levodopa Levodopa / carbidopa. It was all very straightforward.

@bmfoster My 82 year old mother has had many if not all of those same symptoms and was diagnosed by her geriatric doctor with Lewy Body Dementia. If you don’t mind me asking, do you know how different is that from your diagnosis?

@bmfoster My 82 year old mother has had many if not all of those same symptoms and was diagnosed by her geriatric doctor with Lewy Body Dementia. If you don’t mind me asking, do you know how different is that from your diagnosis?

@bmfoster My 82 year old mother has had many if not all of those same symptoms and was diagnosed by her geriatric doctor with Lewy Body Dementia. If you don’t mind me asking, do you know how different is that from your diagnosis?

I was diagnosed 8 years ago. Nobody in my family has it. I knew the symptoms I had…no left arm swing, little or no sense of smell, handwriting became very small. I was a medical transcriber. I noticed my pinky finger on my left hand would occasionally twitch. My PCP did a screening neurologic. He said he believed I had an essential tremor. I made an appt with a movement specialist who is also a neurologist at NYU Langone in NY. Dr. Chan made the PD diagnosis after I performed a rigorous number of movements which clearly indicated deficits. This was Marc.h 2018. I am 73 yrs old. I try to walk at least a mile a day. I go to Rock Steady Boxing once a week, I bowl once a week. This is my idea of regular exercise. I try to do stretches every other day, but I find it hard to motivate myself. The symptoms of PD are so varied with each person I I meet with PD it is hard to compare strategies. I have low blood pressure. When I am coming close to my next dose of meds, it is like hitting a wall and I am moving in slow motion.

I was diagnosed 8 years ago. Nobody in my family has it. I knew the symptoms I had…no left arm swing, little or no sense of smell, handwriting became very small. I was a medical transcriber. I noticed my pinky finger on my left hand would occasionally twitch. My PCP did a screening neurologic. He said he believed I had an essential tremor. I made an appt with a movement specialist who is also a neurologist at NYU Langone in NY. Dr. Chan made the PD diagnosis after I performed a rigorous number of movements which clearly indicated deficits. This was Marc.h 2018. I am 73 yrs old. I try to walk at least a mile a day. I go to Rock Steady Boxing once a week, I bowl once a week. This is my idea of regular exercise. I try to do stretches every other day, but I find it hard to motivate myself. The symptoms of PD are so varied with each person I I meet with PD it is hard to compare strategies. I have low blood pressure. When I am coming close to my next dose of meds, it is like hitting a wall and I am moving in slow motion.