Looking for some thoughts, as to say that my wife and I are confused is an understatement! There have been 3 neurologists involved in my case, all based at the same hospital, using the same diagnostic equipment.
I was diagnosed with Parkinson's Disease in July 2010 aged 36 at the time. I started seeing a neurologist in June 2009 after having an unexplained seizure for which I have no history, and there has been no explanation for. I suppose I began to take more notice of my body after that, and the same neurologist began to investigate hand tremors and muscle stiffness shortly afterwards.
The seizure has no bearing in all of this, other than being the catalyst to go see the neurologist in the 1st place.
By July 2010, I had been assessed for PD, having a DAT scan in April 2010, the usual physical assessments, and ruling out other possibilities. The DAT scan result indicated that PD was likely. This 1st neurologist has clearly stated in his letters that I meet all the diagnostic criteria for PD
"Without question, he has got a tremor at rest, he has got bradykinesia and a positive DAT scan and fulfils the diagnostic criteria for Parkinson's Disease"
Due to my age at the time, 36, the 1st neurologist asked a 2nd neurologist to review the case, who after his own physical assessments, and using the same DAT scan data, arrived at the same conclusion. Two medical insurers also paid out a substantial combined lump sum, as critical illness policy claims, and raised no queries over both consultants work.
During July 2010 to present, I have been taking Requip XL with good results for both tremor and stiffness, and life has been good :) . It certainly wasn't nice to be told that I had PD, but as a glass half full person, I've just tried to get on with life and enjoy it.
I am also aware that DAT scan is an imperfect tool that cannot give a black or white analysis, but the findings of the 2 neurologists reassured me as well as can be expected.
By March 2011, the 2nd neurologist asked a 3rd neurologist to carry out some genetic analysis, to see if there were any particular genetic links to my diagnosis. The 3rd neurologist has a particular research interest in genetics, and carries out 1 day a week work at the NHS hospital, carrying out pure research the remainder of the time.
My wife and I met with the 3rd neurologist, who carried out his own physical assessment of me and instructed a 2nd DAT scan as he felt there was some doubt in the 1st DAT scan (which had never been mentioned before by either of the other two)
This 2nd DAT scan, carried out almost 1 year after the 1st (positive) DAT scan now shows that there is no loss of dopamine producing cells, which has now thrown the original diagnosis into doubt. The 3rd neurologist instead feels that I should be diagnosed with Dopamine Responsive Dystonia, which seems, to me at least, a strange diagnosis for a 37 year old man with no previous history of dystonia, which I understand to show itself more in young children, mainly female.
On his recommendation, I have been taking Levodopa for the last 6 weeks, and again, the tremors and stiffness are helped greatly, without some of the tiring effects of Requip XL
I've never been angry or unwilling to accept the original diagnosis of PD, instead relying on the professionals involved to come to their own conclusions. I am also not calling into question the professionalism of any of the 3 neurologists involved, but am more concerned at the reliance on the DAT scan
I think I need to pursue the option of having another DAT scan carried out, this time preferably on a different machine in a different facility to see what result this throws up. The 3rd neurologist feels this is unneccessary, as he is confident in his revised diagnosis, over the diagnosis of the other two and the original scan!!
What would others do in my situation? Do I stand my ground and request another DAT scan at a different facility, or as a last resort, request a completely independent neurologist to start the whole diagnostic process from scratch?
Check out the thread started by essjay on the 24th August titled Dat Scan. It is in the About the Forum section.
I contributed the following link in my post on the above topic:www.parkinsons.org.uk/Docs/is_diagnosis.doc
Part of the above document states:
"How will DaTSCAN help with diagnosis? Can DaTSCAN definitely diagnose idiopathic Parkinson’s?
DaTSCAN is a useful diagnostic tool for distinguishing between ET and Parkinson’s plus syndromes. It cannot definitely diagnose idiopathic Parkinson’s. The scan will only help if the diagnosis is uncertain and the possible diagnosis is either ET or a Parkinson’s plus syndrome. It is of advantage if a person’s tremor is unusual or if there is uncertainty about the presence of other Parkinson’s symptoms. It is not of value for people in whom the clinical diagnosis is very likely to be either Parkinson’s or ET, as the scan will simply restate that the diagnosis is very likely. The scan does not make the diagnosis any more likely."
In response to your question. I would, finances permitting, get an opinion from a specialist in movement disorders, from a different hospital to the current one. Normally two out of unilateral resting tremor, bradykinesia, rigidity and postural instability leads to a PD dx.
Seems like your experience is way too "in-house" and this is surely not doing you any good, the last thing you need is stress upon stress.
God luck with it all.
I too am newly diagnosed and I too have wondered about the accuracy Of DAT scans. From the stuff, which isn't much I have to admit, I've read it seems that interpreting the scan is where conflict lies. A member of my family is a lawyer specialising in brain injury and he's said that making sense of scans is more of an art that a science, but you wouldn't think that to read the evidence. I'm a natural sceptic but something else I've noticed is the variety of PD symptoms. They seem kind of random so I'm not surprised you feel confused and doubting. To some extent I share that and also haven't classic symptoms..
If I were you I'd not ask for another DAT scan but get another highly trained consultant radiologist [or two] to examine the present scans. I don't know where you'd find them but a lawyer specialising in personal injury is a good start. I'm not advocating litigation but just how to get more info. to set your mind at rest.
Look after yourself.
hi peter, it all sounds very complicated and frustrating for you when i was diagnosed 8yrs ago i saw one neurologist who confirmed pd that day and had a scan later which ruled out any other problems, after the daignosis was,nt seen by a specialist for 18mths i think i slipped through the net and have only seen him twice since, a couple of years ago i went to a talk by proffesor david burns who practises at the royal victoria infirmary newcastle and was very impressed, another friend who lives in southsheilds said she was being seen by him and recommended i see my gp and get a refferal which i did i now see him once a year and my pd nurse every 4-6 months, i don,t know if you watched the documentry on channel 4 the other week sex lies and parkinsons he was on that, dont know where you live but i would recommend him he is such a lovely man and has a special interest in pd he does research into it as well as dealing with other neuro conditions, he takes the time to listen and has a wonderful team behind him to them he is known as prof burns, i live 2 hrs away from newcastle but its worth the journey once a year he changed my meds last year and things have improved i was off sick last time i saw him and did not think i would get back but thanks to him and his team am now back at work, just thought i would mention him good luck sue.
I've made an appointment to see another neurologist privately - someone that's not been involved at all to date
Plan is to ask him to overview the medical reports to date, assess my symptoms and to suggest any course of action before going to the hassle of any other scans
Appointment is 25th October, so not long to wait :)
Hi all i had a recent appt with nuero and she said that a DAT scan doesnt quantify PD so i never had 1 but i had a CAT scan and a shed poad of blood tests to ule out other things
Well....where do I start?
Met with another neurologist a couple of weeks back, talked over the circumstances, the diagnosis, and handed over various letters I'd had from the other consultants.
I have to say that this neurologist has been very helpful, and has reviewed all available scans (the two DAT scans, and two MRI) - his findings are that the latest DAT scan is unequivocally normal, whilst the original scan has an unusual pattern - he puts this down to an "artefact". His own observations of me and my symptoms are that I don't display the signs of someone with Parkinson's Disease.
In short, he feels the diagnosis of Parkinson's Disease is incorrect, and whilst there are still some unanswered questions about symptoms, it really does seem like a genuine mistake was made by the two original neurologists when analysing the clinical data available to them.
As some of you will have experienced for yourself, to be told that you have an incurable progressive illness is a pretty hard thing to get your head around. To be told that a mistake has been made is also a strange feeling...a mixture of relief and bewilderment
There's no anger involved towards anyone involved, as all the neurologists involved have been very good
I'm also conscious that my circumstances are mine alone, and I wouldn't want to give anyone awaiting test results any cause to doubt their neurologist - they are the experts here trying to make sense of a lot of complex information, and I truly do not feel any negative feelings towards any of them involved in my case.
Next step is to move on, and work with one of the original neurologists to try and see what is causing my symptoms of tremor, tiredness and headaches, but that's for another day...
Hi everyone, hopsticks here .Just to let everyone know that i had mine dat scan 4th november and results 10 days later. Hurrah, i do not have the "dreaded lurgy" parkinsons disease and feel a profound sense of relief . i realise i,m very , very lucky. Hope i never have to attend a hospital again ever. Want to say i,m thinking about all you guys with PD and pray a cure will be found soon .