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

Did you suffer from iron deficiency?

@tngirl103
No.
Is iron a factor in PD?
Thank you!

I read somewhere that iron could be considered a factor in Parkinson’s. That if it was too high or too low, both were a problem, but I don’t remember how I found it. I think I googled anemia and Parkinson’s. I’m concerned that my husband may have Parkinson’s as he has the REM sleep disorder, lack of smell and anemia that requires frequent iron infusions.

Maybe 2 years. Started with PT thinking I had injured myself with a mountain bike wreck. Then came the headaches and a tremor with my left foot when I was exhausted. Went to my primary and they sent me to a neurologist.

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.

I too have had symptoms for many years. Lack of smell, tremor, balance, issues, and a host of other things that could be attributed to PD. I was diagnosed about two weeks ago. I got the final diagnosis. I also suffer from depression and anxiety, so I had a weak of where that was really bad. But it seems to be lifting now some. I am 66 years old.

@seand
were your headaches bad? what helped

@chrissymc
did anxiety worsen durin off times

It worsened after I got my diagnosis of PD, because I was worried about the future. That lasted for about a week or better, but then once I did some more research and once the doctor told me that I was in the early stages, I kind of just put it into the category of just another illness that I have since I have so many. I do have a psychiatrist and he deals with my depression and anxiety with medication.

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.