Newly Diagnosed with PD

By bk57

1 min read

Hello,

My name is Kaye and I was diagnosed with PD six weeks ago. I have a tremor in my left hand, I am right-handed so I am lucky. Has anyone felt like the diagnosis was wrong when the neurologist told you that you have PD? I am on Sinemet at the present time. I have always had bad equilibrium, and do not feel my balance is any worse than it has always been. I have an appointment with a movement specialist in June.

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Chris H. Community Admin
Thanks for sharing your story, Kaye! Getting the diagnosis can definitely lead to a lot of questions. I hope you can keep us updated after your appointment with the movement disorder specialist! As this article suggests, about 5-10% cases of PD are misdiagnosed as something else: <a href='https://parkinsonsdisease.net/diagnosis' target='_blank'>https://parkinsonsdisease.net/diagnosis/</a>. Take care! - Chris, <a href='https://parkinsonsdisease.net' target='_blank'>ParkinsonsDisease.net</a> Team
donh Member
I can't remember where to post questions so I hope this
1. Jessica.H Community Admin
 Hi <inline-mention user-id="3058512" username="donh"/> , did you have a question for us? Also, please feel free to post your question on our Q&A section -<a href='https://parkinsonsdisease.net/q-and-a' target='_blank'>https://parkinsonsdisease.net/q-and-a/</a>. Wishing you well. -Jessica, <a href='https://parkinsonsdisease.net' target='_blank'>ParkinsonsDisease.net</a> Team Member
karenrose Member
I’m 53 years old and also newly diagnosed with young onset P.D on Dec 20,2019. I’m also right handed like you and all my symptoms presented on the left side. Over the past 5-6 years I noticed I had a tremor in my left arm when I yawned and an intermittent tremor in my left leg and I attributed it to nerves during my divorce or a back and neck injury that I had. I developed a limp over the past 2 years which got worse and I didn’t realize my foot had dropped and my left leg just didn’t seem to be working right so I was dragging it . I also had a painful Herniated disc tear in my lumbar spine and the neurosurgeons I saw all told me I needed surgery . Since I’ve recovered from the surgery which was successful in that it alleviates my low back pain , the limp and drop foot persisted and turned into twisting foot spasms ( dystonia ) by September I was unable to also swing my left arm and I started tripping over my left foot when I walked in the grass to pick up my younger kids from school. I Had been going to physical therapy too for months but the rigidity and stiffness I had on the left side of my body wasn’t improving so I went to a neurologist. I had a repeat Lumbar EMG which confirmed the nerve was better from my spine to my leg and the neurologist said it was from my brain and on my Clinical exam he said he thought I had Parkinson’s disease. Once I googled all the symptoms I realized how long this had been going on . I still had trouble accepting or believing it. I was hesitant to start the Sinemet which he said would make me feel better if I had Parkinson’s, but he suggested I have a Datscan . A brainscan which shows the part of the brain that produces dopamine and The diagnosis was confirmed in Dec after the Datscan showed the areas of my brain no longer producing dopamine . The neurologist showed me scans of a normal brain and compared it to the scan of my brain which was consistent with Parkinson’s disease . If you are doubting the diagnosis, and your health insurance will cover this test , it was worth it to me to have the confirmation. I’m now taking Sinemet 1/2 tab 25/100 & Rytary 35/145 four times a day . I do feel some on and off periods and a focal dystonia in my left foot that has been relentless and painful so I’m still battling with it
1. bk57 Member
 Thank you Karen for sharing your story with me. It is nice to hear from someone that has been newly diagnosed in there 50’s that has also been affected on the left side. I appreciate the info about the Datscan. I will look into that. I am sorry to hear that you are still having such pain in your foot. I do have 4 herniated disc in the thoracic area of my back and one on the left side of my neck. I have been going to a holistic chiropractor for the last four weeks. It has helped with the pain. Some of my symptoms seem to be related to PD and yet, some are not. My balance as I mentioned earlier, has always been clumsy, therefore, I can not say that it is a PD symptom. My left foot tingles and hurts and I have a limp. I had spasms in my left leg quite regularly before I took Sinemet...I still have the tremor in my left hand and arm. I seem to lean to one side, which is the left side. I am a little slower than I used to be as far as walking. I guess, I just feel like I should have more symptoms. I have read that a cardinal symptom of PD causes you to lose your sense of smell. That has not happened to me. I will know more in June when I see the movement specialist and also, look into the Datscan.