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When I go to add new people, I don’t understand why a person themselves, spouse or parent is what they write. I am confused why anyone would join a Parkinso’s support group if they do not have a diagnosis from a neurologist? The only thing they write is’unsure of diagnosis’
Thank you for helping me understand this💖
Answer Summary
Members came together to explain why someone might join a Parkinson's support group without a confirmed diagnosis, sharing that many... Read more
I have seen the medical community misdiagnose many people with many things, myself included. Misdiagnosis is the top reason for malpractice suits. A friend of mine was diagnosed with Parkinson's and treated for it for 8 years. Then his diagnosing neurologist moved from the clinic and he was handed to a movement specialist that said he did not have Parkinson's at all! His was re-diagnosed with ridiculopathy (another variation of PD like dystonia, parkinsonism, etc). Knowledge is power. People may come on this platform with an alternative diagnosis, or PD and feel it doesn't really fit them. Afterall, how much time do your doctors spend talking with you when you go in? Most appts now are capped at 15 minutes! If they hit on a diagnosis, they also stop looking any further as to what else it could be. On this platform we have a wonderful opportunity to ask questions and hear all about the various diagnosis related to PD, and PD! We can compare what we (or loved one) are going through to what others with the same or similar diagnosis and symptoms are going through. We are always told we have to be our own advocate for our health. Why? Because doctors are human and make mistakes! To my knowledge, there is no absolute test to conclude PD. The wealth of knowledge on this platform helps us define our symptoms and our questions for our doctors to get the right diagnosis. If nothing else, it's a great education about PD, which is wonderful for anyone to have!
@A MyParkinsonsTeam Member, While I know I have Parkinson's Disease; at least I'm as sure as I can be as my doctors agree with the diagnosis, there is the possibility that I have another condition/disease/ disorder besides or possibly instead of. Parkinson's. I have joined other groups for conditions that have been discussed even though I don't have a diagnosis, nor may I ever. More than likely, if it's determined that I don't have that particular condition, I will leave that group, but while it is still a possibility, I am there mostly for observation. I am candid with the other members, hoping to gain some insight that might shed light on what I have or don't have.
As for MyParkinsonsTeam, it is for Parkinson's and Parkinsonism patients and their loved ones.
Parkinsonism is a condition that has similar symptoms, but doesn't quite match up with the clinical definition of true Parkinson's Disease.
If I understand correctly, this site welcomes anyone who wants to learn more about the subject such as a neurology student, a behavior therapist, or or maybe a pastor or Sunday School teacher who might one day have someone in church with Parkinson's and want to be prepared.
That's a really thoughtful question! The journey to a Parkinson's diagnosis can actually be quite long and uncertain for many people. Not everyone receives a clear diagnosis right away — some people experience symptoms for months or even years before getting a confirmed diagnosis from a neurologist.
Here are some reasons Show Full Answer
I was diagnosed about 6 years ago, but some of the literature I have been reading along with symptoms I experienced leads me to believe I had it many years ago. My first visit to the neurologist came after a referral from my primary care provider as I had been experiencing balancing issues and had fallen and torn my rotator cuff. The neurologist at that time said he was not ruling out Parkinson's disease and wanted to see what would happen with my physical reactions to some medications. After a period of time I had a brain scan, and I was told I did have Parkinson's disease. I agree that the site is available to students and others who have an interest in finding out more about the disease. This is particularly important when funding for Parkinson's research is needed. So I hope that all of these notes have helped to clear your confusion. You are cared about.
My opinion is a lot of the time the neurologist has to wait to see symptoms develop. A lot of the neurodegenerative diseases look similar in the beginning. Prior to committing to a diagnosis in many cases the doctor will list the patient as "unsure diagnosis" and give the disease time to progress. 90% of Parkinson's diseases are idiopathic even after a diagnosis is given. I know friends from other groups that over time their diagnosis changes. From one doctor to another their diagnosis changes. Of course this is just an opinion, you must always speak to your doctor concerning medical questions.
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