Early onset but clear DaTScan?


#1

Hi

Ive recently been undergoing tests for Parkinson's, I've been experiencing symptoms for around a year and after clear mri's and lp, I was referred to the Parkinsons specialist at a near by hospital. I was quite surprised to even hear the work Parkinson's mentioned to be honest. I'm only 30 and didn't even realise it was something that could happen so young. After visiting the specialist and explaining my symptoms, weak arm and leg on right side, loss of right arm swing, stiffness in right side of my mouth and cheek, tremors in right leg, walking with a limp and slowness of movement again on my right side. I've also been suffering with an urge incontinence which wasn't even something I thought was related.  The specialist seemed pretty sure it was PD but sent me for a DaTScan because it is still so rare in people my age. The GP contacted me today to say the scan was clear. He wasn't sure what would happen now though. I've got an appointment with the specialist to discuss the results in a week or so. 

Im just so frustrated now, although PD isn't an ideal diagnosis aged 30, it was still a relief to feel as though I was finally getting closer to finding out what was wrong with me and now it's like I'm back at square one. I'm just wondering if a clear datscan totally rules out PD? 

Thanks

Clare

 


#2

PD is diagnosed clinically, i.e. from the presenting symptoms.  Because young onset of  PD is less likely than in the 55/60 up age group the DATscan  is to check if there are any other more likely  conditions.  If its is clear then your symptoms  are more likely to be down to PD.  The next stage is usually to see if you improve when given PD meds.  I m afraid  it is not unusual for people to left floundering by neuros.    My original dx at 69 was "probable" idiosyncratic (no known cause) Parkinsons.  My symptoms were bog standardf or my age and after I had responded very well to Sinemet, on the next GP letter th "probable" had disapppeared.  None of this was explaiined nor anything much else.

Although relatively rare, there are nevertheless thousands of young onset PWP's who can and do keep in touch with each other so if it does turn out to be PD there is peer support to be had.

 

Best wshes


#3

Hi Clare

The symptoms you have are typical of PD.  There are many conditions that can cause those symptoms and i believe you can still have PD with a negative DaTScan.  They may try you on PD medication to see if that relieves you symptoms.  If they have they given you a DaTScan it seems you are getting good care and a diagnosis shouldn't be far away.  I understand that not knowing is frustrating, but whatever it turns out to be there will some sort of treatment.  I was diagnosed by a DaTScan and and i all have the symptoms  you have.

Richard


#4
Im in a similar situation to you, ive seen a neuro but he didn't tell me what he was thinking, ive got lots of PD symptoms and im like you, I just want to know and possibly get some treatment, its so frustrating! Gotta wait 6 months for my next appt but will keep calling for cancellations. Im only 28 so if you wanna talk im here :-)