DAT scan next week; stop supplements? - Cure Parkinson's

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DAT scan next week; stop supplements?

cclemonade
cclemonade

I’m having a DAT scan next week. I’m dreading it. I don’t want to see my brain damage. But I have to do it.

Should I take a break from my supplements prior to the appointment?

What else should I know?

I’m typically quite strong but this has me nervous. Any advice would be greatly appreciated.

57 Replies

Have you seen a scan result? It means very little to us lay people. And its not scary. I wonder what it is you are dreading? What is causing you to feel nervous? Is it that this will confirm your PD diagnosis? In my country we don’t have DAT scans so I think you are fortunate to be offered one.

cclemonade
cclemonade in reply to Hikoi

Seeing the part of my brain that is depleted is going to be difficult. I have only seen online images of DAT scans.

Hikoi
Hikoi in reply to cclemonade

And the ones you have seen? Are they scary? Of course having a DAT scan is a choice, and looking at the results is a choice. You write that you have to do it but if you see yourself as having choice and hence in control of the process you may feel better .about it.

Very unlikely that your supplements will impact the scan.

What id like to know is whether levodopa impacts ioflupane binding (and consequently datscan images). Okun has one paper where he says datscan images improve considerably when on ldopa treatment and another where he says ldopa shouldnt affect the scan. I havent bothered to write to him to find out why this is but im a bit curious about it.

I had Datscans on diagnosis, pretrial, and 6 monthly through the trial. They are lovely. I usually nodded off. The worst aspects were the routine nightmare finding a vein, and the 3 hour wait in the nuclear ward while the injection gets to its destination. It's completely quiet, unlike an MRI scan, and although the machine gets quite close to your face, is much less claustrophobic than an MRI. Lie back and enjoy the rest!

And don't worry about supplements

Make sure you remember to take your potassium iodide tablets on the day before, the day, and the day after to protect your thyroid

Datscan on diagnosis

Potassium iodide tablets??? I need to learn about those. The impetus behind my finally getting a DAT is to get in to a trial. Which trial were you in?

I was in the Biogen SPARK trial of BIIB054 - their monoclonal alphasynuclein antibody. The trial has just recently been halted "early" due to lack of positive statistically significant results for its recently revised primary outcome. Which is very disappointing. And a bit confusing, since I had signed up for an extension and my early finish in April was 2 months after the original end date. The trial actually completed. My team at Toulouse were clearly a bit surprised too . They had 6 of the 313 participants, so had an opportunity to observe. They suggested Biogen may well "discover" positive results on a revised analysis of the data - a bit like the Prasinezumab trial

Which trial are you looking to join?

PD diagnosis is based on clinical presentation. DATScan will only show the Dopamine available, leading to a confirmatory inference of the diagnosis. It doesn't show any damaged brain. If you are convinced that your PD diagnosis is correct, then DATScan is not necessary.

kaypeeoh
kaypeeoh in reply to JayPwP

I don't agree. The DAT shows where dopamine is made. It shows the left and right sides. For my case it showed the right side smaller than the left side. My symptoms are on the left side. So it gives me proof of the condition. Which motivates me to take Rytary three times daily. Doctors telling me I have PD and need medication wasn't enough motivation. For most people it might be and a DATscan is unnecessary. Personally I have little trust in doctors and need proof.

cclemonade
cclemonade in reply to kaypeeoh

My situation is a flip of yours but I have the same mindset. I know I have PD. My symptoms are a page long. My father has PD. But, based on my presentation, I would not be diagnosed bc my constant internal tremors and other symptoms are not visible.

Given the experiences I’ve had with managing my fathers PD care for the past 10+ years, I have very little faith in the doctors I’ve dealt with.

JayPwP
JayPwP in reply to kaypeeoh

You may disagree.

If a person is L-dopa responder, DATScan is only confirmatory.

There have been many discussions on this forum about the need / no-need of DATScan.

Also see below:

healthunlocked.com/cure-par...

cclemonade
cclemonade in reply to JayPwP

I understand and I agree. My symptoms do not feel mild for me but they look mild to others.

Kwinholt
Kwinholt in reply to cclemonade

Cc, I understand exactly what you are saying. I demanded the DATScan bc I needed proof of my PD , my husband too. It clearly does show damage and deficit, at least mine did. Once I completed the all day stuff and sat down with my PD neurologist, he explained every picture/slide to me and my husband. It’s hard to except but definitely for me it was better to see the proof with my own eyes and move forward with determination. That was almost 10 years ago. Lately I struggle and have my pitty party days but I know why my body is doing what it’s doing. I support you and hopeful for you in the trial you want to be part of. Take care my friend. Karen

cclemonade
cclemonade in reply to Kwinholt

Thank you Karen. You understand. That means so much. I read in a different post from a long time ago that you worked for I believe it was 7 years post DX. It inspires me to know that’s possible. Laglag worked 10 years. That is mind boggling to me how she did it. May I ask, in hindsight, are you glad you continued working? I’m debating what to do. I’m only 45. I definitely relate to your pity party days. I am trying to not be angry but I am. I assumed I had lots of career time left. Maybe I just need to completely let that go. We are planning as much safe travel as possible in the next 3 years. Basically what we hoped to do in the next 10-15 years we are going to try and prioritize and squish what we can in to 3-5 years. It is validating for me and freeing that you admit to your “pity party” feelings. I’m not so alone. My pity party is out of control at the moment. Planning my retirement at 45 is so angering. Thank you for listening. Emotionally low low low at the moment.

kevowpd
kevowpd in reply to cclemonade

Google Ben Petrick. 20 years in and about your age. Still going strong. His IG name is strenghthroughweakness.

cclemonade
cclemonade in reply to kevowpd

Thank you. He was diagnosed at 22. That certainly offers some perspective. His Dad had it as does mine.

Kwinholt
Kwinholt in reply to cclemonade

Cc, I didn’t plan on going out this early as well. I technically just retired on 04/02/2021 but have been out on disability and was approved for social security disability but they put me through a lot of hoop jumping and I hired an attorney. I have been a librarian at an elementary school for 23 years and the last couple years it had become to hard to hide. I will admit I’m angry too but I know all of us have our moments, and I realized it’s ok. I have to say not having to worry about work and having it all together every day has helped, if I’m having a bad day , I don’t have to go anywhere. I do exercise everyday too. Give yourself a break sweety. Tomorrow is a new day and it sounds like you have a great plan ahead. ❤️ Karen

I feel compelled to write and offer support- been a bit of a silent browser on this forum - but it’s been a lifesaver

It’s so hard keeping work going and keep up all the body and mind maintenance to slow PD progression

I was older than you when diagnosed but I have young children still and I have to work as I’m freelance

Anyway I appreciate your presence on this forum and wish you well - sending you lots of positive vibes from UK

Thank you for sharing and relating. I truly appreciate it

JayPwP
JayPwP in reply to kaypeeoh

"While a DaTscan cannot diagnose PD, doctors use them to confirm a diagnosis. A negative DaTscan result does not rule out a Parkinson’s diagnosis, but a positive result helps confirm it. The problem with positive results is that it does not differentiate Parkinson’s disease from other forms of parkinsonism, such as multiple system atrophy (MSA) or progressive supranuclear palsy (PSP), that can also produce a loss of dopamine in the brain."

parkinson.org/Understanding...

WinnieThePoo
WinnieThePoo in reply to JayPwP

That is not correct. On all counts

PD is misdiagnosed on clinical presentation even by experienced neurologists up to 20% of diagnoses pubmed.ncbi.nlm.nih.gov/274... . Whilst only an autopsy is conclusive, Datscans provide valuable diagnostic information in cases, like mine, where there is potential for confusion with other parkinsonisms

Datscans do not show dopamine available - which is why they are unaffected by dopamine supplementation (sinemet etc). The scan is of the radioactive emmissions of Iofluplane(123l) which is administered by IV injection 3 hours before the scan (it has a 13 hour half life). Ioflupane has a high binding affinity for presynaptic dopamine transporters (DAT) in the brains of mammals, in particular the striatal region of the brain. A feature of Parkinson's disease is a marked reduction in dopaminergic neurons in the striatal region. By introducing an agent that binds to the dopamine transporters a quantitative measure and spatial distribution of the transporters can be obtained.

As such it very much does show damage to the brain - it shows the number of dopamine neurons remaining and their positional distribution

If your neurologist is not convinced of the diagnosis, then a DATscan will help him to be assured. Your own profile suggests you might benefit from one. It is not correct to state that response to dopamine medication is a definitive diagnosis tool - there are many drug resistant PWP

My Dad was not responsive to CL and his diagnosis was subsequently delayed until he was in such bad shape other diseases were ruled out. What Jay was saying is standard care in my experience, not optimum or infallible but standard.

Hikoi
Hikoi in reply to WinnieThePoo

So you disagree with Jays quote from the American Parkinsons Foundation . Thats interesting.I wonder how many of those misdiagnosed actually have a Parkinsons plus syndrome. My understanding is that DAT scans cannot differentiate, is that correct?

WinnieThePoo
WinnieThePoo in reply to Hikoi

No. I disagreed with Jay's original comment that datscans don't show brain damage and are not a helpful diagnostic tool. These threads get quite untidy as to where responses appear with no timestamp or post number

JayPwP
JayPwP in reply to WinnieThePoo

DATScan does not show brain damage.. DATScan leads to a confirmation of PD diagnosis by inference of remaining dopamine producing areas of the brain.

Comma shaped = normal, dot shaped = abnormal is inference, not definitive

That is why every PD diagnosis is not confirmed with a DATScan. A neuro orders the scan for confirmation of diagnosis, and not for the actual diagnosis itself, which is based on clinical presentation and differential diagnosis

Example:

1. Front stoop, bradykinesia, gait issues - differential: PD

2. Backward stoop, bradykinesia, gait issues - differential: PSP

kevowpd
kevowpd in reply to WinnieThePoo

"Datscans provide valuable diagnostic information in cases, like mine, where there is potential for confusion with other parkinsonisms"

Really? What type of parkinsonism did they think you might have? Because according to this paper, the only types where DATSCAN is likely to differentiate to a useful extent is vascular and drug-induced.

(my italics)

"However, DaTSCAN approaches alone are not sufficient to diagnose PD because they do not reliably distinguish PD from other parkinsonian syndromes associated with nigrostriatal degeneration, such as atypical parkinsonism"

"However, it is not possible to distinguish DLB from other atypical parkinsonian disorders such as MSA, PSP, and CBD with DaTSCAN due to overlapping patterns."

ncbi.nlm.nih.gov/pmc/articl...

So far as I can see, Datscan gives a good idea as to whether you are in the parkinsonian bucket or the non-parkinsonian bucket (i.e ET, other things that may mimic PD).

WinnieThePoo
WinnieThePoo in reply to kevowpd

Yes, my parkinson's onset was immediately coincidental with starting amlodopine and became worse with a dosage increase.When leading neurologists like Christine Brefel at Toulouse and Naheed Khan feel they are useful as diagnostic aids I tend to defer to their knowledge and experience

The other syndromes not distinguished are the bad super-parkinsons.

They also believe it can help objectively track disease progression researchgate.net/publicatio...

kevowpd
kevowpd in reply to WinnieThePoo

I see. I was not aware of the 'bad super-parkinsons' technical term, in my defence.

WinnieThePoo
WinnieThePoo in reply to kevowpd

webmd.com/parkinsons-diseas...

What's the worst that can happen? You find out you have Parkinson's.

True. I have dove in to accepting this PD reality. Being a person person inclined to negative thinking leaves little room for denying unfortunate realities. seeing the physical evidence of my diminished brain is more than I want to expose myself to. But, I want to get in to a trial so I’m doing it. Trials can give a sense of purpose to this diagnosis.

LAJ12345
LAJ12345 in reply to cclemonade

And if you find you don’t have it according to the scan? Are you prepared for that? What will that mean?

cclemonade
cclemonade in reply to LAJ12345

I have it. My symptoms are a page long. It’s just hard to see proof of the brain damage. My original intention with this post was to find out if I should prep in any way

MarionP
MarionP in reply to cclemonade

Check out or stream the very fun movie called "Bridge of Spies" Tom Hanks. Before you get the scan.

Besides being really entertaining and based on true story, not what you think, it's a spy story about the Cold War and professional spys, not anything "feel good," just a great regular old spy story, there is a repeat passage in there that will fix your feelings if you catch it. It's something the spy the Russians are going to ask to have back, something he says every time Tom Hanks asks him whether he is "?????". By the end of the film, he gets it.

I had one which confirmed diagnosis. Of course I was not happy but was appreciative I was fortunate enough to have one. Nothing to be nervous about.

cclemonade
cclemonade in reply to ParlePark

Thank you. It is forcing me to let go of the tiny bit of denial I have been holding on to but didn’t want to acknowledge.

ParlePark
ParlePark in reply to cclemonade

You are not alone. Once i accepted my condition I slowly adapted and enjoyed the good days.

I had one late last year and it’s not a hard thing to go through then I received a letter from my Neurologist saying he had seen the results and explained what was happening in my brain and confirmed my PD diagnosis...The problem I had was that I was Diagnosed in August 2017 at 52 years old and he only sent me for the scan last November even though I asked for the scan when I first was Diagnosed which he said I didn’t need as my early symptoms suggested I had early onset PD..I’ve also asked for a copy of the scan report but as yet he hasn’t given it to me even though I saw him last month and he didn’t even go through the scan with me then..So I’m in the process of trying to get a copy or look at the results..I know I have PD which is predominantly all left sided and I’ve had a horrendous few years on different meds prescribed which most have made my condition worse especially my tremors and Dystonia with my toes curling up and severe cramps in them and my foot....I’m now only on co-Beneldopa 25/100 4 times a day and Tryhexyphenidyl 1mg 4 times a day...When I wake up first thing in the morning when my symptoms are at there worse I take a natural Mucuna L-Dopa from a company called British Supplements and when it kicks in after half hour or so my symptoms completely stop and I’m normal again for anything up to 4-5 hours it actually works better for me than any synthetic drug I’ve been prescribed....I told my PD nurse and Neurologist about the natural pill but they didn’t believe me so I sent them a before and after video....My nurse looked into it then slowly believed me but my Neurologist didn’t until my last visit earlier this month when he said he was happy for me to carry on taking the natural one alongside my others.....The problem with this awful illness is it is so individual from person to person and you have to find out largely by trial and error what works for you....”one mans meat is another mans poison” as the saying goes...I hope your scan goes as well as it can and good luck on your journey

Farquharson
Farquharson in reply to OAFC

I received a paper copy of my DAT scan report, which confirmed my PD diagnosis. It was written in technical language and therefore added nothing to my understanding of my disease. Let your neurologist interpret it for you. Thanks for sharing the information about the supplement. Good luck

OAFC
OAFC in reply to Farquharson

Your welcome and yeh he explained it thoroughly in a letter and my PD nurse phoned me earlier and she’s getting a copy off him and posting it to me Be brave when you have your scan

Good luck to you to

cclemonade
cclemonade in reply to OAFC

Thank you for all the info. Is the Mucuna L-Dopa come in a tan bag with a British bulldog on it? Just confirming. I was looking for it online

OAFC
OAFC in reply to cclemonade

Yes it does 😀

OAFC
OAFC in reply to OAFC

You can buy a 5 pack sample or 30,60 and 90 per pack and they’re quite cheap to 😀

OAFC
OAFC in reply to OAFC

😀😀👍

cclemonade
cclemonade in reply to OAFC

Thank you!

OAFC
OAFC in reply to cclemonade

If you purchase and use some let me know how you get on please

cclemonade
cclemonade in reply to OAFC

I definitely will!

I have no experience with DAT scans so can't offer any help there, but I did face your exact concern about retiring early and working through my bucket list, or continuing to work. (I am a management consultant and am a partner in the firm I founded.) I chose to continue working. That was 7 years ago and I have never regretted it. PD has a very long list of things one might lose and I just decided to not give up one single inch of a life I loved to this damn disease until I had to. I have taken longer vacations and cut back considerably in the last couple of years. I only work virtually now and spend more of my time training our younger consultants than working directly with clients. My workdays are shorter than when this started but I still end each day feeling like I was able to contribute something worthwhile and I have an identity beyond the PD label. Yes, I do find time for exercise and pay careful attention to nutrition and my progression is slow...inexorable, but slow. We each find our own way and I hope you find a path that brings you joy in the midst of the PD struggle.

cclemonade
cclemonade in reply to Jana86

“I decided to not give up a single inch of a life I loved”. That just hit me so hard bc I relate to it so much. Thank you so much

Datscan is pretty straightforward. No prep is needed. It'll likely be positive as you say but at least it's confirmation of your diagnosis. Itll give you piece of mind knowing your diagnosis is accurate.

Hi, CC! May I ask what clinical trial are you going to participate in?

Thank you! :)

cclemonade
cclemonade in reply to Despe

Exanatide from Neuraly. I really want to get on this trial.

Kwinholt
Kwinholt in reply to cclemonade

Cc, Is that trial her in the states. That is a diabetes medication they are looking at for PD, correct? K

cclemonade
cclemonade in reply to Kwinholt

Yes! They have multiple sites across the US. It is being done by Neuraly but only for those not on meds. Have you heard about the stem cell trial in Houston at University of Texas? Intravenous stem cell infusion. Phase 2 so safety established. Partially funded by MJFF

Despe
Despe in reply to cclemonade

Best of luck, CC! One of these days we will conquer the monster!!!

cclemonade
cclemonade in reply to Despe

Hi Despe! You might be interested in the stem cell trial in Houston at University of Texas. I know you’re not in TX but it’s phase 2, intravenous so it’s pretty easy, and MJFF is funding (mixed feelings on them as you know but them funding it I a good sign to me as they seem cautious)

Despe
Despe in reply to cclemonade

Excellent idea, if I could only convince my husband to travel to Texas. :( As much as we flew during his career, he doesn't have to do anything with airplanes and airports any longer. He gets very stressed out.

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