Waiting for a diagnosis

Good afternoon … I saw my doctor at the start of May and was referred to Neurology as urgent . I have an appointment for 28th August 2023 . My doctor has since written to Neurology to inquire how we can access a sooner appointment . Is this others experience ? I am considering paying privately for a consultation , but i am worried there may be other tests required which would make it too expensive.
If anybody could offer some words of advice ?
Thank you for your time

Hi BevG,
We wanted to take a moment to welcome you to the forum community, and make you aware of some resources we can provide. A good place to start would be this section for the newly diagnosed, and you can use the handy search feature to look up loads of information on testing, costs, and the like. We also have a free and confidential helpline at 0808 800 0303, staffed with advisers who are always happy to help with a range of questions and requests. Please don’t hesitate to reach out, and again, welcome.
Moderation Team

Thank you Jason .

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Hi @BevG 2023? Is that a typo? :scream:

I can’t offer much advice as I was seen (back in 2019) after about 4 months if I remember rightly. For me diagnosis meant (beyond the initial appointment with the neurologist) an MRI test and then a DATSCAN test (similar to MRI). Both of which I imagine would be very expensive done privately.

Post the area of the country you are in, people might have specific advice.

Hi bev g

I was referrred by my doctor and had a long wait and went private I paid £275 for a consultation I needed2, he prescribed my meds on 1st consultation. I also needed a brain scan at a cost of £199 . NO other tests involved. I hope this helps with your descision. By the way I’m in Somerset I expect costs differ

Hi - I have recently gone through this and I have gone private and its the best thing I ever did! Yes its expensive but I couldn’t wait for the NHS as I had been failed numerous times by them on my diagnosis!
I was seen within 2 weeks of enquiry and my first consultation was about £400 the DAT scan was expensive at about £2K but worth it - I would have been waiting a long time on the NHS and (as far as I am aware) you cant be treated for Parkinson’s until you have had the DAT scan ? I am by no means wealthy and I know people have other considerations, that’s just my story! Good Luck - if you need any more info please get in touch

Hello Simon, just read your post and I was curious to see that (you think) PD can’t actually be diagnosed without a Datscan? My husband (aged 70) was diagnosed 6 years ago. No Datscan offered nor was there ever any mention of one. We were in the office for no more than 2O mins and diagnosis seemed to rest on his gait and stiffness in arms. So quite a cursory examination to diagnose such a complex disease! I’d be interested to know from others on the forum if they had a similar experience to his and also from others wno were offered Datscans on the NHS. Maybe they are used if visual and physical examination is inconclusive? Look forward to hearing from you all. Jean

Hi Jean - Just to clear this up! When I was diagnosed it was without a DAT scan but I was told that I needed a DAT scan to be treated for Parkinson’s and receive the correct Medication - maybe this was because of my age (45) or maybe for another reason I am unaware of - would be interesting to hear from others though!

Hi Simon, I guessed you may be a lot younger at diagnosis. This could be the reason. PD tends to rear its ugly head in the 60-plus age group, so I would hazard a guess that when someone in that age group presents with the red flag symptoms the consultant presumes it’s PD. However, I have also read of people who are told if the PD drugs don’t have an effect on the symptoms, then it’s likely it may not be PD, thus further tests would be required. Indeed, I seem to recall the consultant saying it’s sometimes the only way a firm PD diagnosis can be made… I’m very sorry to hear you have been diagnosed at such a young age. I hope all goes well for you going forward. Good luck from myself and my husband. Jean.

I was diagnosed in 2019 at 49 years old. Berkshire area. My first 30 minute neurologist appointment ended with “I’m sorry to say you’ve got Parkinson’s Disease”. Neurologist explained I would be having an MRI to see what is going on in my brain and a DATSCAN to rule out things that look like Parkinson’s but are not - perhaps he meant brain tumours, I did not ask him. So the MRI and DATSCAN were a confirmation of the diagnosis. All NHS.

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I was lucky to have medical insurance cover from my company and, after a referral from my GP, I had a private an appointment with a consultant that week. It was £300 for 20-30 mins but if you are self funded then I think it costs less. There was an MRI too which ruled out any brain issues but was diagnosed within a week and my GP was given my prescription.

If I hadn’t had medical insurance then I would have paid this myself to save having a long wait for the diagnosis



I was diagnosed at 47 around 4/5 years ago. I went private but had basic medical insurance which I had through work, it didn’t include the neurologist fees but I knew that when I took the plan out. Neurologist was around £250 which I paid and I think about £150 for follow up. I needed a brain MRI which was £400 and a DatScan which was £2500, both of these were paid by the insurance company. I had the scans within 3 weeks and I got a diagnosis within a month of my first appointment. Looking back, if I’d have had to pay for the scans I think I would have waited for the NHS.

It’s very frustrating waiting, but think what else you could do with the money, 2 or 3 decent holidays.

Good luck.

Hi all, very interesting to read the different experiences of Datscans in helping to confirm diagnosis. It does seem like there’s no set guidelines in diagnosing PD and it’s a shame that not everyone is offered these scans on the NHS. But I suppose like everything else it all comes down to cost and the consultant you get to see.

I was diagnosed in May at my first consultation with the neurologist. I had been sending him videos of my tremor prior to this. He did a few reaction type tests and got me walking around. No mention of any scans and he put me on Ropinirole thst day.

Hey bev

Like others, I’m hoping the 2023 bit is a typo, as that would be ridiculous. If it’s this august I’d say it’s not too bad a wait, If it’s in a years time then deffo get a private appointment. I did what Simon did, however, once I got my initial private neurologist appointment I then went back on the NHS for my MRI and DATscan. The initial appointment was around £200, after that things moved quickly even on the NHS. MRI took 4 weeks, DATSCAN around another month after that. DATscan isn’t used for everyone, but as I’m the same age as Simon it’s used more commonly to diagnose, it may be the neurologist puts you on sinemet to see if that makes a difference without a DATscan. If it makes a difference then that in itself would be enough to diagnose PD. Good luck, let us know how you get on.

Hi there i was dx at age 36 talk my neurologist 15min said walk up corridor and down ,draw circle and write a sentence Bang you’ve have parkinsons disease and most probably had it 5yrs wow

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Hi Bev, when my GP thought I had Parkinson’s 12 years ago I had to wait six months before seeing anyone at the NHS. I couldn’t wait so I decided to go privately for a diagnosis which I think is a good idea to put your mind at rest. It cost £300 then (may be more now) but worth it The specialist put me on meds straight away which was a relief instead of waiting six months. Good luck

Hello, My husband saw a GP 3 weeks ago he was told he may have early stages of Parkinson’s my husband is not dealing with this at all well, he has been referred to neurology and now on the waiting list for an appointment. We have a call with the GP this afternoon to discuss his medication to see how the change in prescription from 3 weeks ago is going, this has been a nightmare for him hardly any sleep, tremors are worst and he is showing more confusion than before having the news, he has been suffering from anxiety for about 10 years. Like BevG would appreciate any advice. Thank you

Hi Jilloy - Sorry to hear you are having a rough time of it - I have only been diagnosed for about 2 months and its hard - but its not the end of the world. There’s loads of support out there if he wants it! Like him - I haven’t slept for what feels like months. Exercising has been a great help to me mentally - You are both not alone,

My NHS consultant did the cogwheel test and .gave. Whoop of delight when my arm jerked
. “Definitely Parkinsons” she said. I asked for a Datscan test and MRI which were done after a two-month wait but they lost my results for a further 3 months. I was not impressed! JCPB