Psychogenic PD

[Pezo]

well ,I was diagnosed with possible Parkinsons about 4 months ago , then sent for a DATscan , which confirmed it ... but when i saw the neuro's notes on the computer screen he had written to my dr that he thought it was 'psychogenic' .....? do I take it to mean thats 'all in my head' or can you have that WITH a positive DATscan ... I was under the presumption that psychogenic meant sorta psychosomatic ?? i.e no loss of dopamine ?

[M_rosew]

Why not just ask your Neurologist what s/he means by that.

[Xenos]

As far as I know - which is not much - yes it does : psychogenic refers to kinda psychosomatic.

I assume that under "psychogenic Parkinson's" no dopamine is produced and/or transported, but dopaminergic neurons are simply idle. I asked my neurologist after DATScan, and he answered me that the real diagnostic is made by autopsy.

Just my two cents, Pezo.

[park_bear]

"All in your head", is exactly what that means and this is totally unacceptable given the confirming DAT scan. I call that kind of comment from an MD "poisoning the record". I would find myself a new neuro, and, if you see fit, send this one a letter telling him why he got fired.

[TheGimba]

I agree with Park_bear. They tried to pin that label on my husband along with a few others when we had guessed Parkinsons all along, pathetic. His GP made fun of him and said that he thought he had it just because his mother had PD....ughghghghgh! Of course they both do and worried sick that our daughter may have.

[Hikoi]

I'd take a deep breath before moving on. Im wondering who told you your date scan was abnormal and why this doctor wrote what he did. I do think its potentially a very damaging label so worth getting it all clear. I would want to read the whole letter to see what he says and why. He would be likely to explain his reasons in the letter. I know you said the only symptom you were aware of was a tremor when you moved your hand. How did you get on with sinemet?

[Pezo in reply to Hikoi]

I still have doubts whether its PD , I wish someone would/could clarify what a 'resting tremor' is , because I ONLY get a tremor when walking/ exercising .... I fully expected him to say the DATscan was negative , the levodopa , AND Rasagiline does absolutely nothing to stop the admittedly sporadic tremor ... but the Neuro said the scan was positive for PD ...

[Hikoi in reply to Pezo]

reading scans needs great skill. What was the radiologists report on the scan? Have you seen it?

[park_bear in reply to Pezo]

PD tremor can indeed be sporadic and is aggravated by stress, for example. Resting tremor refers to when the limb is not in use so you can still have an arm tremor when walking. But for PD it would be unusual to never have it when completely at rest. In advanced PD the tremor can happen all the time, resting or not. Where do you have this tremor?

[Pezo in reply to park_bear]

Hi Park Bear ..I get it in the left wrist . it is aggravated by stress , when I first saw the dr I wasnt seeing him about the tremor and just mentioned it in passing , I assumed it was caused because of the stress I had been under at that time. But I have never ever had it while resting , as in sleeping , early waking , going to sleep etc ...

I suppose the 'safest bet' is that I have early signs of PD @ Hokoi , no I havnt seen it , I can imagine they are very difficult to decipher .....

[park_bear in reply to Pezo]

If this occasional tremor is not bothersome there is no urgency to try to find a med to alleviate it. The PD diagnosis is in question since the symptom is atypical and levodopa doesn't help. I would be on watch for other PD symptoms such as muscle tightness and insomnia, and also consider other diagnoses.

[Martha2 in reply to park_bear]

Park_Bear, Like the Picture! Yes, I agree with Park_Bear & Hokoi, take a deep breath and one day at a time. DatScan is a questionable test at best. There is a lot of questions about the test, and many... MANY doctors do not trust / believe in the test. Many studies have shown the same PD person having a DatScan 2 weeks apart with 2 different results, and the Radiologist and Neurologists don't know why. Plus there is no NO STANDARD to determine how to read the test, so you have cases where the Neurologist "sees" one thing in the scan and the Radiologist "sees" something totally different. I have tremors, and they "dance" A LOT when I am stressed or really tired, or low on med's. If my med's are peek, and rested, and low stress I never see the tremor "dance". If the PD meds help, then that is usually the key to determine if it is PD. It can be a Parkinsonism, which has similar symptoms however does not respond to the PD meds. Hang in there - Bear Hugs m

[park_bear in reply to Martha2]

Nice picture yourself

Yes, stress definitely aggravates tremors.

Bears R Us : - )

[Winnerbeginner]

Hey Pezo,

Just following up from your post last year. What's the latest?

[Pezo in reply to Winnerbeginner]

No change really , the tremor is still manageable, the neuro sees me every 6 months ... tremor only in left side still

[Kia17]

When someone newly diagnosed with the PD‘ in denial phase ‘rejects any organic disorder and try to find other reasons than the PD. It happened to me and I was thinking of Psychogenic PD. I asked 2 Neurologists and 1 consultant Radiologist and all confirmed if you have positive DatScan it will be PD than Psychogenic PD.

By the way my DatScan was positive.

Psychogenic PD diagnosis is very hard and sometimes take years.

[Winnerbeginner in reply to Kia17]

Let me try to get this straight. YOU were diagnosed with PD, but rejected it and tried to label yourself as psychogenic. Then other docs told you postive Datscan is regular PD?

[Kia17 in reply to Winnerbeginner]

Correct . Plus I was sympathetic.

[Winnerbeginner in reply to Kia17]

symptomatic***? you were showing symptoms, right? were they mild and early PD symptoms that you or docs could suggest were related to other medical problems.

***not trying to be grammar police, at all. it's just that sympathetic means something else. And I really want to understand what you're saying.

[Kia17 in reply to Winnerbeginner]

I had the following symptoms.

Swallowing problems.

Smelling difficulties.

Rigidity.

Slightly tremor.

Reduced one side arm swing when walked.

Weight loss.

Dystonia

Bradykinesia( slowness of Movements).

Anexity and depression

Speaking problem ( stammering)

Slurred speach

It was May 2017 when I was diagnosed officially by DatScan but had symptoms from earlier years.

Now after a year of diagnosis my symptoms are almost Zero (0).

See my posts for more info and let me know if you have any questions.

[Winnerbeginner in reply to Kia17]

Will do. Just one last question. With all those symptoms were you sent for a Datscan by your doc to rule out Essential Tremor or did the doc want to prove it wasnt psychogenic PD.

[Kia17]

I had all the above symptoms when I was sent for the DatScan with initial diagnosis of : Asymmetrical Parkinsonism and none of those specialists were suggesting Psychogenic PD. I myself raised the question of possible Psychogenic PD and they all rulled that out.

[Pezo in reply to Kia17]

I sorta see what you mean ... but it could still be 'real' PD surely as my neuro said from day one that in early stage the symptoms depend very much on stress / happiness / mood etc .. I also have most of the symptoms you list to varying degrees , but again they are very much affected by nerves etc

[Winnerbeginner]

So Pezo,

Did your docs give you the actual diagnosis of PD or are they calling it psychogenic PD. And what meds are you on?

[Pezo in reply to Winnerbeginner]

Yes , they said PD was tested positive in the DATscan , I am on Rasagaline and Sinmet 25/100 , 3x per day , but I only take them when I feel the need ..... so imo the likelyhood is I have early PD ...but , I have the feeling the neuro hasnt made it 'official ' yet .

[Winnerbeginner in reply to Pezo]

Ummm, if you're on Rasagaline and Sinmet and they are working, it's official. I'm just saying