Is it possible to have PD and no symptoms?

[kaypeeoh]

I have a hard time believing I'm sick. I don't have balance problems, I don't freeze or move slowly. I have a normal sense of smell and taste. But the DAT scan says I have PD. Can the DAT scan be wrong? I understood it's the gold standard for PD diagnosis.

[park_bear]

Small study says that DaTscan can yield false positives:

n.neurology.org/content/78/...

Diagnostic Reliability of DaTscan in Movement Disorders

Results: Sensitivity of identifying abnormal scans was 1.0 for consensus review. Specificity was 0.714, negative predictive value 1.0, positive predictive value 0.875. Two subjects had false-positive images (1 healthy control, 1 ET). Inter-rater reliability was 0.948 for identifying abnormal scans, 0.896 for grading abnormal scans, 0.790 for detecting asymmetry of decreased uptake.

More false positives here: n.neurology.org/content/78/...

Role of DaTSCAN and clinical diagnosis in Parkinson disease

Results: In early PD, a clinical diagnosis of “possible” or “probable” PD has a sensitivity of 98% and a specificity of 67%. The specificity increases to 94% once the clinical diagnosis becomes established. The overall accuracy of the clinical diagnosis is 84% in early PD and 98% at later stages. The clinical diagnostic accuracy is mathematically identical to the diagnostic accuracy of DaTSCAN imaging.

[Esperanto]

Research results show that the clinical diagnosis of Parkinson's disease is incorrect in about 20% of cases. A Datscan will therefore be able to significantly reduce the margin of error, but 2% is still (too) much.

pubmed.ncbi.nlm.nih.gov/267...

[JohnPepper]

Hi. Are you a physically active person? do you do regular running or walking? If so, then that answers your question.

[LindaP50]

In thinking back, one of my hubby's first signs of PD was small handwriting. At doctors' offices I was the one to fill out all forms. Neither of us thought anything about this change and did mention to a primary care doctor - don't recall him having any concern. He doesn't have tremors.

A few doctors said he had Parkinsonism. When he had the DaTscan we both thought the radiologist perhaps made a misdiagnosis especially since the neurologist didn't look review the scans just read the diagnosis. I said you didn't? Well, we both did, so could you? Anyhow, after his first uti hospitalization more symptoms started to appear.

After the DaTscan did your doctor prescribe C/L? How do you feel overall?

[MomoP]

I have a hard time believing I have PD too. I’m not in denial. If I do, I’m wondering if the DAT results were an accidental finding and my symptoms won’t present until later? I do have balance issues but I’m starting to believe it’s from nerve issues. The last few years, I’ve mentioned to a few Drs that I have more of a neuropathic gait than a PD gait. No one really listened. I think when my chart says PD, they assume any symptom I have is from PD and dismiss it. I think I’m suffering the consequences of their inaction. Last Fall, I had an EMG/NCS and had to have surgery for ulnar and perineal compression. The neurosurgeon said the nerves were so damaged, it will be a good 2 years before I find my “ new” normal ans whether the nerves have healed,grown,etc. The problem going on for 3 years, has caused muscle imbalances and is now causing claw toes, making mobility and pain even worse. I’ve had no reaction to C/L, Macuna, Mannitol,etc. I have no tremors, my handwriting and sense of smell is normal. I have a brain MRI on Wednesday. She’s looking for signs of corticobasal syndrome ( I don’t want that!), signs of a stroke or vascular injury. I’ve been diagnosed with Antiphosphilipid Syndrome and brought it to her attention that my research shows, it can cause movement disorders. Here’s hoping for a clear and perfect MRI! Good luck to you in your search for definitive answers!

[kaypeeoh]

Thanks for the replies. I had a well-crafted long response written but lost it somewhere, All that remains is a photo of my handwriting. I can read it if no one else can.

photo

[BriMeister]

Sometime constipation maybe an early sign. There is no test which is 100%, You could have a Syn1 skin biopsy which measures alpha sin nuclin in the skin. Its simple, 3 skin punches from the trap, thigh and above the ankle. Why did they do the DAT scan without any symptoms, its about $30K USD

[kaypeeoh in reply to BriMeister]

When I turned 65 suddenly it was available at no cost.

[Graham3196]

Doctors and testing can always be wrong. About 5 weeks ago I had emphysema based on a few symptoms and an Xray. The good doctor explained that unfortunately it was untreatable and terminal.

I wasnt happy with that and, like you, I didn't feel terminated so I traveled to a doctor I used 20 years ago and who I trusted. She said that x-rays were not the best for this job and ordered a CT scan. It was a miracle. The CT scan cured me and now I have to live for another 20 years. She's a wonderful doctor but charges $100 to say hello. For serious things she's worth every cent of it.

If its serious then always get another opinion from the best expert you trust.

[kaypeeoh in reply to Graham3196]

I developed a serious rash on my neck and forearms. The doc knew I was a vet and decided I had a fungal infection, specifically Ringworm. I didn't think so and used a test kit for canine ringworm. It required plucking a few hairs and dropping them into a jar of growth media. For a positive Ringworm test the media would turn bright-red within three days, For me it didn't and I changed doctors. The new doc diagnosed MRSA.

When they decided I had MS the doc walked in and said I'd be in a wheelchair in six months. That was 5 years ago. I'm still running 30 miles per week.

[Graham3196]

Well done! I keep saying to myself Ive got to get more exercise ... but not today its raining or Ive got too much work to do or etc. You inspire me to try harder

[ParlePark]

K,

6 1/2 years in. Dat scan showed PD and was “extraordinarily mild at first”. Smell was excellent when diagnosed and so was balance. Just small tremors at first. My PD is extremely slow moving. Now I have substantial tremors, dystonia, dyskinesia, sleep, balance, etc. I’m riding a peloton recently with Pedaling for Parkinson’s. It definitely helps with attitude and possibly tremors and sleep. Thank you NanCyclist. If I could do Rock Steady Boxing I would, but can’t. My rec, exercise, exercise, exercise. Read, play music if possible. live the best you can right now.

[kaypeeoh]

A few days ago I had Botox injections in my arm and neck. The doc thanked me for detailing my symptoms. I replied, "Sarcasm..?." That broke up the room; The doc, two nurses and my wife all laughed like crazy. I bet people seldom find humor in a doctor's visit.

[Esperanto in reply to kaypeeoh]

Sure, but usual they have a different sense of humour. Also you have to keep it short, because the attention span is poor.

[House2]

Diagnosis of PD via DaTscan and clinical exam are similarly accurate.

Despite the DaTscan being available to help diagnose PD, in most clinical situations, a DaTscan will not add information to what can be gleaned from the clinical exam.

One study actually demonstrated that the accuracy of diagnosis in early PD was the same whether the diagnosis was reached using clinical exam or using DaTscan.

[Gymsack]

I have had 4 neurologists , and the first who made the initial diagnoses almost 25 years ago was head of neurology and cardiology at a famous university hospital and he was recognized world wide , and I would still be using him had he not died. He told me that a scan was not necessary and would not give him any more information to diagnose or treat the Parkinson's and that I did not yet have any other symptoms that would indicate having anything more than Parkinson's. That further observation would show if medication treated and improved the symptoms / effects of Parkinson's and confirm his diagnoses. I have never had a DaTscan.

It is my understanding that Parkinson's is the symptoms, and if you don't have any symptoms that you do not have Parkinson's. No doctor that I am aware of will prescribe PD medication for a person that does not have PD symptoms. The scan does not say you have PD, it says that you have physical abnormalities which somebody (probably not your doctor ) who read the scan thought might be PD . I am confused as to why you took the scan and why they gave you the scan in the first place and congratulate you on not having Pd and I hope you stay healthy

[kaypeeoh]

youtube.com/watch?v=QtS18HE...(Not working as expected?)

I found an old video of me on YouTube. Dated July of 12017. If you look close it shows my left-hand tremor. And tells me I've a tremor at least 7 years ago. I've been on medication for 3 years. Nothing else has changed since 2017. Doesn't PD cause worsening symptoms and deterioration sooner than 7 years?

[kaypeeoh]

"Last Fall, I had an EMG/NCS and had to have surgery for ulnar and perineal compression...."

Hello Momo, I had peroneal nerve entrapment. I also see that you had APS. Me too! The video shows a tremor. But this was 7 years ago. The tremor hasn't changed in 7 years. I realize PD and ET can occur together and my tremor is noticeable when my hand is at rest. The video shows the tremor as I'm holding that syringe. I don't drop items or spill liquids.

Something to tell my doctor when I next see her.

[Mezmerric]

Do you have any clinical symptoms at all? If not why were you advised to have a Datscan?

[Gcf51]

Are you on B1 Therapy? It is kind of tricky with no symptoms. You might try backing off meds and see if some symptoms reappear. Then start B1.

Then again, if you are walking/running everyday, you may not need the meds anymore.

[Juliegrace in reply to Gcf51]

If you read many of his posts, he always says he has no symptoms, but usually buried in somewhere is a reference to some symptoms. This has been going on for years. He has also been diagnosed with some form of dementia, although he is pretty high functioning.