Hi. I went privately yesterday with my husband to see a neurologist as my husband is having problems with doing up buttons, writing, opening packaging etc etc and his left hand shakes when he is trying to do tasks involving fine motor skills. We were told there was a 2 Year waiting time in Lincolnshire to see a neurologist which is why we have dipped into our savings and gone private. The neurologist asked lots of questions and went onto considerable detail about what might be the problem. Then he looked at the MRI we had requested on the NHS and said that the scan confirmed what he was thinking that there were signs that my husband might have Parkinson but he recommended a DaTscan to back up his diagnosis. He couldn’t tell us how much it would be but said that we would have to go to London for this. I have searched the internet to see if there is somewhere nearer to us to have the scan but am struggling to find a list of hospitals/clinics which do this type of scan. CAN ANYONE ON HERE point me in the right direction. I am usually quite good at Googling but am failing this time. Thanks.
Hi Stuart36. Thank you for your post and we’re sorry to hear about the difficulty your husband is having. We also have a helpline where we can put you in touch with one of our Parkinson’s nurses who can offer their advice and guidance as you navigate through this process. It’s free to call and totally confidential: 0808 800 0303.
We hope you also find this Forum helpful.
Parkinson’s UK Moderation Team 
Hi,
I had a DAT scan on the NHS at the John Radcliffe hospital in Oxford, I was told that it costs over ÂŁ2000 to have a private DAT scan so I hope you manage to get it done on the NHS.
Good luck and let us know how you get on.
Good evening Stuart … I had a Brain Mri scan & a datscan in June 2023. I am 71 years old.
As I understand it a brain scan is done so rule out more serious issues & check for mini strokes which are a sign of Vascular Parkinson’s.
The datscan measures the amount of dopamine in the brain.
I have had 3 consultant neurologists look at my datscan. The first one [NHS] said it was positive for Parkinson’s, the second I saw privately and he thought my datscan was normal. He sent my datscan away for a second opinion and the opinion of that neurologist, who is a top expert, said “marginal Parkinson’s”. So the jury is locked.
I have just had a second Mri Brain scan done privately to check for mini strokes which would give a Vascular Parkinson’s diagnosis. Results in a week or so.
I was on Co-caredopa for about a year and then stopped entirely for 2 months as I was having significant sleep side effects.
I play Indoor Bowls and during my 2 months without Co-careldopa I had 3 days out of 8 where I could not get my balance and could not participate. Now I am back on this drug I have not missed a game and am playing really well.
One of the “proofs” of having Parkinson’s is if the dopamine replacement drugs help your symptoms. So I am certain I have one of the forms of Parkinson’s.
Looking at your own Parkinson’s diagnosis although the datscan is a good tool, it is not 100% proof of Parkinson’s.
The real proof comes from whether the dopamine replacement drugs you will be put on help improve the symptoms you have.
I found Madopar did not work for me but Co-caredopa did.
Drugs are trial & error.
Any questions please ask.
Best wishes
Steve2
Hi Stuart,
I agree with Steve a dat scan is not definitive to diagnose pd, the diagnosis comes from a neurologist exam and symptoms displayed and your response to medication in my opinion. I believe I would get a neurologist exam and move forward from the there.
For Parkinson’s info try looking at parkibot AI information resource.
I find YouTube a useful information resource.
Hi
I’m new here folks
Recently retired GP , and unfortunately I diagnosed myself with Idiopathic PD at age 52 following onset of right sided tremor and severe neck dystonia (spasms.) I had the confirmatory DAT scan on the NHS at Manchester Royal Infirmary in 2023-please check with your GP if you could be referred out of area -the radioactive tracer used has to be ordered from Holland and has to be ordered few weeks in advance
Thank you for that information. We will wait for the report before deciding if we need more advice.
Thank you. I understand from the consultant that The London Clinic is the one he will refer to.
Thank you for your reply. We are waiting for the report from the consultant as it was difficult understanding a lot of what he told us. It was shrouded in medical terms. I understand the DaTscan should either back up his diagnosis or lead to looking for other reasons for my husband’s symptoms.
Hi Stuart
I also paid to see a Neurologist in June of last year due to a 6 month waiting list here in Leeds. At the consultation for which I paid £200 he said he thought I had Parkinson’s but referred me for a Datscan and MRI on the NHS. These were done in July of last year at the LGI and St.James’s in Leeds and my result pf Parkinsonism was given to me in August.£200 in total all done and diagnosed in 2 months after 3 years of GP’s telling me I didn’t have Parkinson’s.
@Stuart36 - I live in Lincoln and when I moved here I chose to stay with my Neurologist at Adenbrookes in Cambridgeshire. 2 reason for this a dear friend of mine who has sadly now passed away told me whatever I can do to stay with my current Neurologist I should do as the one at the Lincoln hospital in their opinion was not helpful. Secondly my Neurologist as well as running two clinics a month at Adenbrookes also jointly runs the John van Geest research centre for Brain repair. I am fortunate enough to be in one of his research cohorts. Not only do I trust him as a expert in his field, but being part of a long term research project and also some short term ones in his centre gives me greater access to support I need. I calso feel I am helping to advance studies trying to find a cure.
When I moved to Lincoln 5 years ago I had and still do have lots of trouble accessing Parkinson’s specialist services eg PD nurse, Occupational health, physio etc. After an 18 month wait I had an appointment with Mr S***a (dont wish to name him) who basically told me that I should move to him where I would see him once every 18 months and the PD nurses in between appointments. He told me if I didn’t then I could not expect to see the other PD specialist in Lincoln UHT. I did manage to see the PD nurse once who said they are stretched and gave me a number if I need any help. I find they don’t call you back so rely on PUK nurses via telphone or email my consultant. My GP did sort out referrals to other service for me.
I currently see my Neurologist every 6 months and see a PD research and another consultant at least once a year. Which in the opinion of the Lincoln Consultant and PD nurses is too often which I don’t accept. However this just shows the horrible post code lottery we have when it comes to treatments.
I am by no means an expert on PD but have been living with it for 10 years. If you or your husband want to have a chat I am more than happy to do this. I am not sure where in Lincolnshire you live but I live on the outskirts of Lincoln city.