How long did it take to get your Parkinson's diagnosed? What type of doctor or specialist diagnosed you?

How long did it take to get your Parkinson's diagnosed? What type of doctor or specialist diagnosed you?

A MyParkinsonsTeam Member said:

Not sure of the correct answer to your question but I have several friends who also have PD and were misdiagnosed 3-6 times before finding a neurologist who spend 15 Minutes getting you to do certain things like flipping your hands over as quickly as you can,touching your thumb and finger as fast as you can, sitting on a chair and walking as fast as you can to the next room touch the desk and walk back to and sit on the chair. Tapping one foot at a time as fast as you can. Taking a pen and writing a few lines on how you’re Day is going. That’s all after a brain scan to determine no lesions. Squeezing the neurologist hand with each hand to determine the difference in strength in each hand. I am right handed and that use to be my strongest hand until PD which is on my right side. There are various conditions that mimic PD. I guess some may be reluctant unless you are far advanced and one look at you is all it takes. You raised a very good question and now have me wondering what benchmarks on the above determines PD or something else. I have an appointment with my neurologist in April. I’ll try and remember to come back to this question but in case it slips my mind can you send me a note reminding me. Thanks Jane

edited, originally posted over 1 year ago
A MyParkinsonsTeam Member said:

I suspected Parkinson's probably 2 years before it was diagnosed. I was an avid runner at the time and noticed that my running gait had begun to deteriorate. My right side seemed out of sync with my left. And when I walked my right arm didn't swing (a classic PD symptom). As time went on I also developed a tremor in my right hand. Also started to have rather nasty nightmares. Taken together, all of these symptoms drove me to an appointment with my family physician.

From that appointment it was a quick trip to a neurologist's office and a diagnosis of PD. I was also 59 at the time, the classic age range for PD, so that also made for an easy diagnosis. I wasn't particularly pleased with the neurologist so I quickly found the Booth Gardner Parkinson's Center in Kirkland, WA and my current Motion Disorder Specialist, Dr. Daniel Burdick. He reaffirmed the diagnosis and has been giving me great care ever since. If you have any doubt about what you have make sure you see a doctor who is an MDS!

posted almost 2 years ago
A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member, it is not unusual or abnormal to feel scared, afraid of what may be in the future, and a virus can play havoc with a lot of fully fit people too. You are 61 I am 67 and when diagnosed 3 years ago I went through all,those emotions too, don't feel that by telling it as it is for you that you are making yourself out to be worse than anybody else, because no one on this site would ever think,that. We are here to,offer friendship, encouragement and support, not judgement. We all learn to cope with PD in many and varied ways, at this time I think you need to be kind to,yourself, and don't feel bad about this. Sleep when you need to,and if some days you need more rest than others accept that, but, make sure you keep moving as much as possible in your own personal circumstances, even if your movement is limited to walking around your dining room table 3-4 times a day. Try just lifting your feet up and down on the spot,,if you are unable to stand to do this do,it siting on a chair or on the edge of your bed. Keep,your brain active, do crosswords, read books or magazines, stay connected with friends, true friends will be there for you, don't stress over those who don't or can't understand PD, they probably never will. Try to,keep your sense of humour, laughing is good even if directed at oneself, smiling is better than tears. Sending you all the support and encouragement I can, and many hugs, just remember you are not alone and we the members on this site are always here to listen, to vent, to cry with you or laugh with you. Hope this is useful, Linda

posted almost 2 years ago
A MyParkinsonsTeam Member said:

Interesting in reading about the different experiences people have had in getting diagnosed. The first neurologist i saw was when we lived in Missouri. He did an MRI and told me I didn't have parkinson's and that actually my MRI was boring. Then we moved to Indianapolis and started at IU thinking that should be the best place to go. I saw an older neurologist that had me take off my shoes and walk. Told me to put my shoes back on and said that was all, there was nothing wrong except I had poor balance. Then we went to another neurologist and he did another MRI and two appointments where he did all the tests that the lady told earlier. Told me I had some brain bleeds and parkinson's. He started me on medication and changed them until he found the one that worked. Now when people see me walk if they don't know mw never suspect that I have anything wrong.

posted over 1 year ago
A MyParkinsonsTeam Member said:

It is a difficult diagnosis as there is not specific test that diagnoses the disease. It is what is called a diagnosis of exclusion meaning many tests are done to be sure it is NOT other diseases and once no other disease is found BUT symptoms are present that are part of the disease the diagnostic is given and if response to treatment then is PD.
It is not comfortable or easy or perhaps appropriate to give a diagnosis of a life changing condition to a patient until pretty sure it is as there is no specific test the diagnosis may be wrong and patients will also be upset if that is the case.
PD presentation varies a lot, some people have some symptoms and others others and mainly in early stages it can mimic or look like or seem to be many other neurological conditions. Frustrating doctors and patients.
Doctors would love not to have to give such diagnosis ever. Not easy, implications of every condition are known to them.

posted over 1 year ago
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