Datscan

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1

Hi 40 year old male here. I have been referred for Datscan. Excuse the long history.

My original symptoms which pushed me to speak to doctor was a Tremor in left arm, dizzy spells, and a general slowness in thinking.

The slowness in thinking is getting worse. Takes me a while to understand what people are saying. I’ve lost loads of words from my vocabulary (spoken only). I’m getting kids names mixed up and on the spot I’m forgetting basic stuff like cupboard, sink, hover etc.

The dizziness and tremor seemed to worsen about 3 months ago. The problems with speech since then and is gradually getting worse.

I’ve had a whole host of other symptoms some may be related others not.

Historically I’ve had stomach issues, with certain food triggering days of discomfort. I’ve since went vegetarian, and know what to avoid. These stomach problems normally present after the start of terrible headaches, which will last weeks.

In my younger days I halved my body weight 20stone 10 to just under11stone (mainly playing a ridiculous amount squash, but some minor dietary changes). After a car accident I massively gained again, up to about 19stone. No squash = weight gain. I’ve been back to under 14st and currently over 16st. My diet is generally ok although I probably drink too much at times.

I have suffered from insomniaon and off since childhood. This seems to be getting worse recently, with some pretty horrific nightmares involving kicking out.

I’ve suffered on and off with depression. Massively eased with exercise (squash!). I’m currently taking sertraline and have took fluxotine. I had a headache every day for a month on the fluxo. I started this medication last September.

I’m feeling low, generally, lack of concentration, and motivation. Struggle to focus. Feelings of pointlesness My chess rating is going down when I can be bothered playing.

Before lockdown I was picking up callf/hamstring injuries regular despite massive amount of stretching warming up. I lack flexibility considering and previous unrelated doctors appointments have made mention to this.

Recent issues have been:

Pee shivers getting substantially worse. Some times screeming out. This also happens with yawns though not as bad.

I sometimes struggle to fully empty bladder. and dribble if passing wind.

handwriting is bad (its always been bad but worse now). But it’s not smaller.

I’ve had fair bit of impulsive behavior.
Some sexual issues
and issues with pain killers. I’ve had a lot of lower back pain, and in the past self prescribed tramadol/solphadol which resulted in some issues trying to stop. Mainly due to feeling like the real me, the day after taking. Im now having issues with less stronger codine based pain relief. Also stopping and starting smoking (cigarettes with alcohol, Vapping, and nicotine pouches) I feel like i can stop for weeks easily but then I have a week back on it. But generally I have an addictive personality regarding many vices

An important issue I have had is I was positive for COVID back in April last year.

When I finally got into the neurologist, she was brilliant. She assured me that I was the 6th patient of the day, and 4 of them before me had previously had covid and were presenting very similar recent symptoms. However she observed two symptoms additional to the symptoms the other 4 had. During the walking she noticed poor movement in my arms and she didn’t mention what the other symptom was. She said her gut feeling was it was long covid related but she has decided on Datscan (which will be in a couple of months). What can I expect from this? Anyone been through similar? Historically or recent with long covid?

Again, apologies for the long post!!

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Hi Worried,
Welcome to our amazing forum community. We are sorry to hear things have been difficult of late, but we are glad to hear you are pursuing help and speaking to a doctor. Whatever the result of your Datscan, you are welcome to share your thoughts and feelings here. We do have some info on Parkinson’s diagnoses on our website, which we recommend as a starting point for your research, as there is an invaluable wealth of information there, and knowledge, of course, is power. We also have a free and confidential helpline staffed with trained advisers who are able to help with everything from medical questions to emotional struggles to referrals to local resources. Please don’t hesitate to call 0808 800 0303. They are eager to help.
Secondly, we hope you’ll have a look around the forum and get to know our incredible community. In addition to shared experiences and support you will find art, humor, and a lovely ol’ cross-section of humanity.
Best wishes and a hearty welcome,
Jason
Mod Team

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Hi Jason.

Thanks for the warm welcome.

I shall have a look at the links provided

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For anyone reading.

My thoughts and queries are along the lines of…

Does it sound like Im going to be positive?

Do my whole array of symptoms sound familiar?

If the dopamine receptors are damaged. Does that mean it’s Parkinson’s??

How long after the scan will i know. My follow up appointment is march 2022 is this normal? Will they speak to me straight away after results? Got a bit of a heads up last night that the Datscan will be some time in August.

I just feel that mentally I’m deteriorating pretty fast. Physically not so. But worry by next march how much worse I could be.

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Hi and welcome
Being worried is absolutely natural. Can’t answer regarding long covid. Regarding your Datscan it is a definitive answer and lots of people wait ages to have one. Whether you’ll be told immediately I do not know will depend on how the appointment is set up. My husband’s Datscan’s results were telephoned to him with a prognosis that he has Parkinson’s. Can you not telephone your neurologist/doctor before March 2022 requesting results?
With regard to compulsive behaviours these are not symptoms of Parkinson’s Disease rather they can be created by some of the medication given to aid Parkinson’s.
You’ve clearly got some concerns and it is good your doctor is acting promptly to rule things out. Whatever your results, should it be Parkinson’s there is a lot of help available and Parkinson’s U.K. is the best. Good Luck.

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Thanks so much for the response it’s greatly appreciated.

I think when I have the Datscan I will speak to the neurologist.

The reason I mention the compulsive stuff. I guess my wording was probably. Its more an addiction kind of issue in that I’m doing things that give me short term rewards. I.e. crept back into nicotine (pouches and vape and even cigarettes) after stopping a long time ago. I’ve always had spells where I’ve been completely free. But recently it’s creeping in more and more. The big one is the painkillers. Another been porn. The reason I felt these relevant was because I sort of need them to make me happy short term. Wasn’t sure if this was a dopamine related issue.

7

Just got a letter that neurologist sent to my doctor. Very detailed. on the tremor/walking it says "he has a bilateral asymmetric tremor main at rest. On walking he had a good stride length but didn not swing his right hand as much as would be expected. Then att the end it says

"it is likely that this combination of symptoms is a partial consequence of drug affect (sertraline) and partially some long COVID hold over. However, bearing in mind his constellation of symptoms I think it would be appropriate to obtain a dopamine scan to see if there is any deficiency here. Obviously should this be the case I will invite back to discuss.

Think it sounds more positive in writing. At the time I sensed a genuine concern (almost to the level of pity)from the neurologist. But it just might have been her general personality and she is particularly empathetic.

Looks like I’m going to be in for the datscan in next few weeks. Apparently the only do it on a wednesday (my father works at the hospital and has done some digging!)

On the negative side I’ve gone back to nicotine pouches and have found myself taking codeine most days for the back pain. But sometimes when I probably dont need to. Feel like I’m using the excuse that I’m just getting to this datscan and once that is over, regardless of the results I will stop both again. I mentioned previously I’ve had issues with tramadol and how much it makes me feel really happy for days. Well I stay clear of it these days. But codeine seems to be affecting me massively now. Two co-codommols and i’m noticebly "high/happy for literally the full day. They never used to do that.

8

Had another thought last night. We have just came back at a cruise and my daughter was laughing telling my mother about me not being able to do star jumps. We had been at an interactive show and the audience were playing “simon says”. I cant say Its something i do regular, but its definately new. I cant seem to get started. One leg sort of moves out but the other doesnt. We tried it last night and after lots of slow practice I almost got it, but could only do 2 or 3 before losing the rhythm and going back to one leg. Anyone else notice something like this? Or could this be some other motor symptom not realted to potential parkinsons?

I dont know if im paranoid. But it seems that I’m noticing everrything go wrong

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Hi @WORRIED81,

Motor symptoms affect your movement and are symptoms that your doctor can see. The 3 main symptoms of Parkinson’s are all motor symptoms. They are tremor, stiffness and slowness of movement. Therefore, the difficulty you experienced with trying to do a star jump could attributed to this symptom - I would encourage you to raise this with your GP to discuss possible medication to manage this.

In regards to your post above, how has the weening of codeine going? If you’re struggling with this too, then again, I’d strongly recommend that you speak to your GP about this. As always you are more than welcome to give our helpline team a call to discuss this further - the number is 0808 800 0303.

Best wishes,
Reah

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Thanks for the response Reah,

I’m hoping I will get in for Datscan next wednesday or the 11th.

I’ve found my GP to be unhelpful to be honest (baring actually referring me to the neurologist). When I actually got into the neurologist that was a breath of fresh air. she was excellent. But I guess the datscan will give me the answers one way or another.

I’m just worried that everything seems to be stacking up.

Regarding the codeine. This is where I might lose some sympathy. I’m not prescribed codeine. Similarly when I have had issues with Tramadol and solphadol in the past it was never prescribed. It was obtained. As far as the weening is concerned. It’s not really weening. I’m just using them when I am having lower back trouble. (more often than not!!) and sometimes take when I’m not in pain. I am making a conscious effort not take and have a few days clear (my partner knows I have an issue) but then end up back taking them.

I have checked drug interactions etc. and generally if taking sertraline, the effect of codeine will be lessened. This is not the case with me. in fact the opposite is true. Codeine actually sends me loopy/happy/realxed for the full day. Like if I had at 7am. I still probably wont feel completely safe driving at 7pm at night. It never used to affect me so much. I used to have a similar effect with tramadol, only for maybe 5/6 hours.

Really appreciate the responses. I just feel a bit lost at the moment and my partner is really struggling with lots of stuff not related.

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Just to clear up. My GP knows I’ve had previous issues with Tramadol and solphadol. But doesnt know I’m using codeine. However the neurologist does.

12

Scan day is upon me. I’m in tomorrow morning for tablet and nucleur injected. Then the actual scan is tomorrow afternoon.

I’ve took a few days off work from tomorrow. I don’t get paid when im off so was trying limit time off. Just feeling really down about it all the last few weeks. Not sure if me being worried about the scan is making things worse. Last few days I’ve felt really unsteady on my feet. legs are niggling pain all day Back has been worse and Tremor has worsened.

I had a poker night on saturday, and I’m normally the dealer for most of the night. People know somethings wrong. Struggling to shuffle, droppping cards all the time and making mistakes. Struggling with stacking chips etc

I’ve ran out of sertaline on saturday. My repeat perscription will be ready today. Think thats having a negative effect too. I wasn’t too bothered that I’d ran out because I’ve read that I should cease taking them before the scan. But when I spoke to Nuclear medicines they said no reason to stop.

How still do i need to be for the atcual scan. I have bad spells of restless leg. so I’m worried about being still for so long.

I took Codiene on sunday. First time in a week. But not since. Just need to know now…

How long is it normal to expect results by?

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Hi @WORRIED81, :wave:

I sent you a private message a few days ago. Please take a look and let me know your thoughts.

It’s completely understandable that you’re feeling worried right now about your scan tomorrow, however, we have a lot of information on what you can expect via our website which may put your mind at ease. Please visit our website here: How is Parkinson's diagnosed? | Parkinson's UK

Additionally, we’re always here to support you in the best way possible so do let me know via private message if you’d prefer for an adviser via our helpline desk to give you a call to support you further on your situation… :blue_heart:

Best wishes,
Reah

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Thanks Reah, appreciated. I’ve replied to your message. Appreciate the response.

1 Like
15

Just a quick update. I had the Datscan last Wednesday.

I spoke to neurologists secretary today and they advised that its taking roughly 3 weeks from the scan to the call (or letter) from the neurologist.

So I don’t have much longer to wait now. Probably 2 weeks.

I had a tough week after the scan, went to london for my partners birthday Lots of walking. Really struggled friday/night saturday morning. walking in bed and lower leg pain, went to go to toilet early hours of the morning and its the first time I would have ever described my walk as a shuffle. My back was terrible to. I got better as the day went on though.

Not sure if i’m just over worrying. But I’m normally totally comfortable with any amount of walking. That’s always my ideal break. City type holidays, with lots of walking!!!

Hopefully in two weeks I will have a better idea. Was sulking a bit thinking of the stuff I don’t think I can do anymore.

16

A quick update and what seems like good news…

I spoke to the neurologists receptionist yesterday. She confirmed there was no sign of permanent damage to dopamine receptors shown in the scan. Apparently a letter was sent out on Tuesday, so I should receive today.

So it looks like this would indicate me not having parkinsons! Which is a huge relief. But I’m also feeling a bit empty. If it’s not parkinsons what is causing my symptoms???

Hopefully the letter will give me more indication of a way forward. But it sounded to me like Im being signed off by neurology.

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Good news worried81! I wish my datscan had showed nice healthy dopamine receptors!

Obviously now you need to find out what’s causing your symptoms. We sound similar, my ideal holiday is a city break with lots of walking and although I currently can’t do that I’m starting medication soon and hopefully will. Likewise, I’m sure when they get down to the cause of your issues then you’ll be back doing what you enjoy,

I would push to get another appointment with the neurologist before being discharged, a DATscan isn’t cheap so they wouldn’t have sent you for one if you didn’t have clear symptoms that needed to be investigated. Have you had an MRI scan?

2 Likes
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Cheers DB, Yeah, I’m over the moon on one hand. Definitely. I was almost certain.

The letter still hasn’t arrived, but thanks for advice. I will push for further appointment.

I haven’t had an MRI Scan.

1 Like
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Letter arrived saturday.

"Opinion - Possible long COVID combined with drug affect

DaT scan has returned with normal appearances making a form of degenerative Parkinson’s disease very unlikely. This makes the effect of long COVID a more likely cause of his varied symptoms.

O would recommend input from the long COVID clinic though i appreciate that these symptoms can be difficult to manage"

Spoke to GP today and they are referring to Long Covid clinic. I questioned stopping the sertraline, as I don’t think it makes me any happier. Still low mood/aparthy/zero motivation, but I also have an empty emotionless feeling with it.

Bizarrely they are suggesting upping my sertraline. Her thinking was that when i upped from 50mg to 100mg my symptoms never worsened, so she thinks it’s a red herring that it’s drug induced.