Hi everyone
I have been diagnosed by my neurologist with “Parkinsonism, action tremor and possible restless legs syndrome.” On Madopar and Pregabalin. As part of the diagnosis process, I am awaiting a DATScan here in London. Does anyone have a general idea of the waiting time for this at Kings College Hospital and what the general process is for appointments?
Thanks ever so much
Misiek 
Good morning Misiek … I had my DATscan in Sussex about 6 months ago. From seeing the Neurologist to getting a DATscan was about 6 weeks & a brain MRI scan & Spinal MRI scan a further week. All on the NHS.
To my surprise my DATscan was positive & showed I had one of the many Parkinson’s. The Neurologist’s opinion is that I have Atypical Parkinson’s. My other scans were normal for a man of my age. I’m 69.
You turn up at the hospital about 6 hours before the scan. Take a couple of pills, wait an hour then you get injected with Iodine then wait 3 hours. Then you have your DATscan where you lie very still on your back for 30 minutes. Totally painless but extremely noisy.
Once you have the Parkinson’s diagnosis nothing much happens. I have been put on two Parkinson’s pills. Firstly Madopar & then Ropinirole. I have been taken off both & am now not taking anything at all. Pills don’t work if you have Atypical Parkinson’s.
My Neurologist’s opinion was that I could try some pills if I wanted but his opinion was that I was wasting my time. The pills made no difference other than giving me a headache.
Parkinson’s treatment is about managing the symptoms. There is no cure. Everything happens really slowly if at all. Trial & error.
Hope that helps. Any questions please ask.
Steve2
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I suffered badly from restless legs, stopped pegrabilin and it stopped
Hi. Has your neuro told you which of the Atypical Parkinson Syndromes you have?
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Good morning Douglas … Well it is more of a case of me telling him what symptoms I have. I have the following …
A very slight tremor in my left hand.
I don’t sleep very well.
Constipation.
I have trouble initiating movement.
I have episodes of freezing.
I have body fatigue rather than tiredness.
Some balance problems.
My walking has slowed.
Parkinson’s medication does not help.
Significant Blood pressure changes during the day.
My writing is normal.
I don’t have significant shaking.
Before giving his diagnosis the Neurologist carried out a lot of tests on me. His judgement was that I have Atypical Parkinson’s. Atypical Parkinson’s is probably a sector where a patient is placed where the type of Parkinson’s isn’t obvious.
Best wishes
Steve2
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Hi Steve
Here is a link to information that you may already have. As you will see, AP is not just a waiting room but a collection of near-degenerative disorders that mimic Parkinson’s Disease in various ways. Hope this helps.
Cheers
Doug
Good evening Douglas … I seem to have some, but not all of the symptoms listed in most of the Parkinson’s types. The Neurologist has said he thought I had Atypical Parkinson’s. I don’t see what I have can be proved either way. Very frustrating of course. He said he thought that we would never know for sure & there were no known diagnostic tests other than doing an autopsy [his joke not mine].
I have just been diagnosed with New Atrial Fibrillation, last week, to add to my growing list of health issues.
There are quite a few cross over symptoms. The fatigue could be Parkinson’s or/and the medication I am taking or the heart problems I have just found out about.
My numb legs could be Peripheral Neuropathy or Parkinson’s.
Thanks for the link.
Best wishes
Steve2
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Sorry to hear about your new AF diagnosis. I hope that they can keep your heart rhythm in order.
You might want to contact the Cambridge Team as they are doing research into Atypical Parkinson’s. Knowing which one you have should help with future treatments and progression likelihood.
Do you have diabetes? That could also account for the peripheral neuropathy.
Take Care
Doug
Hello Douglas … the Cambridge team ??? No idea which Atypical Parkinson’s I have.
No I do not have Diabetes.
Steve2
Hi Steve. The link is in my earlier reply to you. The Cambridge Team are researchers into Parkinson’s + (Aytpical Parkinson’s)
Thanks Douglas … I have emailed them.
Steve2
Hi Steve
How are you? Did you get a reply from the Cambridge Team?
Doug
Hello Douglas … I contacted them & left my details. They said they may be in touch if they think I can help.
I’m up to 6 pills a day with my Sinemet. Like everyone there are plusses & minuses.
How are you?
Best wishes
Steve2
Hi Steve. Hopefully the Team will be able to bring you into their work soon.
I have had another Dat Scan and head MRI. I had my last ones 10 years ago and suggested to my Neuro at Queens Square that it might be sensible/interesting to repeat them. The Dat Scan showed that I continue to have no neuronal loss but my dopamine uptake has decreased. This would explain the slight increase in the already low levels of PD symptoms. The brain MRI was worse news. I now have a moderate degree of cerebral Small Vessel Disease with a number of areas of dead brain!! The plus point is, of course, is that I still have a brain 
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Hello Douglas … Is there a doubt on whether you have Parkinson’s or the type of Parkinson’s you have? Sorry to hear your other brain issue.
Steve2
Hi Steve
My diagnosis is PD and that has not changed. My Neuro is at the National Hospital for Neurology and Neirisurgery in London. The hospital has its own Brain Bank and is involved with a lot of research in a dedicated research building (known as Neurodisney😂). Because of its specialism, my MRI was reported by a Consultant Neuroradiologist.
Sounds perfect Douglas … I’m jealous.
Steve2
Hi. Have you had your DatScan yet?