Datscan confusion - 29 and awaiting diagnosis


#1

Hello,

I’ve been lurking on this forum for a while, but finally took the courage to sign up!

I was wondering if anyone had any advice regarding Datscan results? I’m 29 and have been struggling with my health since 2014. I went from being an energetic, sprightly 25 year old, to now struggling with daily tasks such as writing, walking, speaking and swallowing. Over the past 4 years I’ve been told it could be anything from a trapped nerve, to MS, to stress. However, last autumn I developed a tremor in my right hand. My GP said it was almost certainly essential tremor but referred me to a neurologist for a second opinion. He sent me for an MRI, ECM, Bloods and a DatScan last month and I have now received all the results. The bloods and MRI have both come back clear, but the DatScan says I have patchy uptake in my left putamen. I was sent a copy of the results by my GP and the radiologist has written under the conclusion "this is in keeping with mild parkinson’s or parkinson’s plus syndrome.’ I was shocked, as Parkinson’s was never mentioned to me at any point, and I certainly wasn’t expecting to find out via an e-mail while out and about one Monday afternoon. I’ve now been desperately trying to speak to the neurologist to get the diagnosis confirmed, but he is illusive to say the least.

I just wondered if anyone has received a similar finding and then gone on to be diagnosed with PD? I feel like I’m stuck in limbo, as until the diagnosis is confirmed I feel like I can’t speak to my friends, family or work about the potential outcome, in case the Neurologist decides the dopamine drop isn’t sufficient enough to class as PD? It’s been 2 weeks since I got the news and I am still battling with the hospital to get any more information on the situation. Am I right to assume a Parkinson’s diagnosis is coming my way?

L


#2

hi clax been through exactly the same thing i would suggest you try helpline phone no.or try and find local pd nurse they will give you good advice try not to panic until your sure and i would avoid reading too much info just yet
Petec


#3

Thank you so much Peter - I will definitely give the helpline a call tomorrow.


#4

hi clax if you think i can help i,m here and will do my best to help you as i,m 9th one of my family to have pd over 3 generations i have gained a fair amount of knowledge
Petec


#5

Hi @Clax,

A warm welcome to the forum.

I can appreciate that this is probably a very confusing time for you, especially as you haven’t received an official diagnosis (at least that’s what I gather from the information you’ve shared). I agree with Peter, our helpline service is a good place to start for any burning questions and concerns that you have. If you contact our helpline on 0808 800 0303, one of our advisers will arrange for a Parkinson’s nurse to call you back within 24 hours.

All the best and do keep us posted on your progress.

Best wishes,
Reah


#6

Thank you so much Peter and Reah, it’s much appreciated.

I called the helpline and had a ring back from a Parkinson’s Nurse which was a great help. No one has explained anything so far, so being able to ask questions about the Datscan result and what it could mean was really great. Thank you both so much for suggesting it.

I received a letter from my neurologist which was a write up of my initial exam 7 weeks ago and he said ‘no sign of parkinsonian’ but that he had requested a datscan due to my tremor to confirm ‘no abnormalities’. I have Fibromyalgia and psoriatic arthritis so he had contributed a lot of my stiffness of movement, speech problems and rigidity to that, so I guess he must be just as surprised at my datscan as I am! Am I right in believing that any datscan result that isn’t symmetrical comma shapes is considered abnormal?


#7

hi clax glad you have spoken to pd nurse hope it has helped i,ve also got fibromyalgia so i know what you,re going through as i said if i can help you please do ask i,ll be glad to try keep up the posts so we know how you,re doing


#8

Hi,
So sorry you are experiencing all this stress. Would you be able to make an appt. With your GP to discuss results and what you now need to do/know? Your GP will be able to point you in the right direction on what needs to happen next.
Best wishes


#9

Thank you Peter. So sorry to hear you have Fibromyalgia, too - it’s a tough one, isn’t it. Sending you all my best. I’ll let you know what they say when I see the neurologist. They’ve managed to move my appointment forward from June to the end of Feb, so I’m assuming they must be telling me something of some significance. It’ll just be nice to know as the anxiety has made my fibro symptoms a lot worse.


#10

Thank you TeeHee, much appreciated. My GP surgery actually called me the day they got the Datscan results just to flag that something had shown up and that a doctor would call me to discuss it more. I waited all week and eventually received a ring. Because I’m so young the GP was reluctant to say the word Parkinson’s and just kept stating that my dopamine was affected and that he was no expert so wasn’t able to say more. In the end as he kept dodging the word I asked ‘could it be parkinson’s’ to which he replied ‘yes. but it’s very rare in people you’re age. I’ve only seen it in patients over the age of 60,70, so it could be something else.’ but when I asked what else it could be, he wasn’t able to say.

I’m assuming because I’m a woman in my twenties, the GP didn’t want to diagnose me even though the datscan result says ‘Parkinson’s and Parkinson’s plus’ because it is so rare in people my age?


#11

So sorry y9u still having to wait your gp clearly is caring and wants to get all the facts first.
I feel this is a waiting game that cannot be avoided. Stay strong, there are lots of people here wishing you well xx


#12

I finally saw the neurologist today and am so confused by the situation. They have referred me to a movement specialist as they kept saying they weren’t able to diagnose me from the information they have.

They showed me the datscan pictures and you can clearly see the left hand side is reduced, however, they didn’t want to confirm the radiologists diagnosis of Parkinson’s as they said the scans can often be wrong. I haven’t heard this anywhere else, and wondered why they’d even sent me to have one if they were then going to dismiss the findings? They just kept repeating that Parkinson’s is very rare in someone my age, and because of this, they didn’t feel they were able to diagnose it. He even suggested that all my symptoms could simply be down to stress as my tremor is ‘too fast’ to be a Parkinson’s one. Again, I haven’t heard this anywhere else.

As I live in London it looks like it will be up to a 6 month wait for the next appointment. I’m feeling very down and angry at the way this has been handled. I don’t understand how one medical professional can diagnose Parkinson’s, but then another completely discard it? Surely the DatScan just can’t be tossed aside like that and the diagnosis be questioned because of the speed of my tremor? Especially when I have so many other symptoms. I just wish I knew what I was dealing with so I could start working out how I am going to live with it. Being told it’s either Parkinson’s or stress are two very different scenarios…


#13

hi clax so sorry that your no nearer to an answer i would either try helpline or demand a second opinion which is your right if your still not happy as a last resort i would try your local community health council .i used ours when i had problems with dad,s treatment before he passed away it,s free in wales hope this helps in some way
Petec


#14

Dear Clax

They do say there is still no 100% conclusive test for Parkinson’s its all a matter of eliminating other things and putting 2 and 2 together . I was 54 (7 years ago) when I had a DAT scan at St Georges at the end of a long series of diagnostic tests (MRI, nerve conduction studies, etc) over about 18 months and, like yours it seems, the scan seemed not to be as bright as a normal one would and dimmer on one side. They said it looked like Parkinson’s but can not be 100% sure. By then I had realised it probably was a form of Parkinson’s that I had and was glad it had taken so long to be sure in many ways. Better to have longer without knowing I had it! So I wonder if the medics are trying to be kind?

However, the medication has helped me so much, you probably don’t want to miss out on it, if it would improve your quality of life, so may be worth asking about it. I feel better now than I did before I was diagnosed. As you are so young you should be regarded as a very high priority case given you will need a very long treatment plan and the best there is.


#15

Thank you so much Peter. I’ve called the helpline as you suggested and they’ve been fantastic. They’ve put me in touch with someone, so my GP is referring me to their care. Fingers crossed they can provide answer. Thank you once again for your help. It is much appreciated.


#16

Thank you so much your help Tilly, it’s much appreciated. I saw my GP this morning and they have referred me to a new unit and marked it as urgent, so fingers crossed. As you said, they agree that due to my age it’s important I get a good treatment plan with the right people, so hopefully this new hospital will be able to provide that, as my health is starting to get noticeably worse.


#17

hi great news as i said never give up there is nearly always an answer glad to help get in touch anytime if i can help i will
Pete


#18

I am so glad to hear that your GP is making a new referral for you. There are some very good neurology services in London. St George’s is very good for Parkinson’s and there’s the National Hospital for Neurology and Neurosurgery, Queen Square of course. If you have Parkinson’s, it will also be good to get an excellent Parkinson’s nurse, if at all possible, and if not, then you need a consultant who is able to see you every 6 months. The medication for Parkinson’s is very good now, I have Rasagiline, Madopar and Mirapexin and they work a treat (altho they made me feel a bit sick when I started on them)… and in your lifetime I’m sure they’ll find much better treatments and probably a cure for you.


#19

Hi @Clax,

We understand your frustration and confusion, however your GP should not be diagnosing pt.’s in accordance to NICE and patients with suspected Parkinson’s must be referred to a specialist for diagnosis and treatment.

“1.2.2 If Parkinson’s disease is suspected, refer people quickly and untreated to a specialist with expertise in the differential diagnosis of this condition”. (NICE 2017)

With that being said, if you have an appointment with a movement disorder specialist we would advise that you keep that but it might be worth investigating if you can get a referral to another centre if this hasn’t happened - you should be able to do this via your GP. We’d also suggest, as you are young and live in London, that you ask for a referral to King’s and specifically a movement disorder consultant who specialises in Parkinson’s as they have a lot of experience in diagnosis, treating and working with younger people.

Although we’re not experts on Dat Scans, they are becoming much more widely used as a diagnostic tool for Parkinson’s but they do have their limitations. Most clinicians that we speak to are using them in conjunction with other diagnostic methods and not as the sole or definitive tool for diagnosis. They are also using them to rule out other reason for the patient’s symptoms.

I hope the above information is useful and provides a bit more clarity on your situation.

Best regards,
Reah


#20

Hi Reah, thank you so much for your help, it’s very much appreciated. Yes, my GP hasn’t diagnosed anything as yet, and agrees that the care I’m currently receiving isn’t correct for what is needed. They’ve referred me to a specialist who has experience of Young Onset Parkinson’s at the National, as the neurology unit I’ve been with so far specialise in head trauma rather than movement disorders, however they’ve told me to keep the M.D specialist appointment I already have just so I can get two opinions. Hopefully from that I can get a clearer picture of whats happening, as the stress of the uncertainty of it all is really starting to take it’s toll on my mental health.