Why have a DaTscan?

[Wilso77]

I showed early signs of Early Onset Parkinsons Disease last year (impaired gait, stiffness, bent at the knees, shuffling walk, dystonia in left thigh) and my first neurologist put me on Levodopa and unfortunately it worked and made my symptoms disappear which I’m aware means that I have PD. Why then would my new neurologist be encouraging me to go for a DaTscan? What can I possibly benefit from doing this scan? I’m struggling with how it will affect my mental health having to see a scan of my brain when I already know what I have. Is there something I’m missing and a valid reason for me to do it that anyone can think of?

[kevowpd]

Some neurologists are still skeptical about EOPD. Not as skeptical as GPs, but skeptical. Nevertheless, effective CL is compelling. Perhaps they dont believe its working?

You are correct, though. What is the point? If it comes back negative, what are they gonna do? Take you off the drugs that are working? DATscans aren't conclusive when negative anyway.

[Nitro53 in reply to kevowpd]

Pardon my ignorance. What is a DAT scan?🤔

[kevowpd in reply to Nitro53]

It is a brain scan to estimate the volume of dopamine transporters in the striatum. PD patients could reasonably expected to have a smaller volume of dopamine transporters than healthy controls. Hence it used for cumulative diagnostic evidence for PD dx, though usually only when the clinical assessment is uncertain (depends on where you are and how much money people want to spend and who is paying).

[Nitro53 in reply to kevowpd]

Thank you. 🙏

[park_bear in reply to kevowpd]

Excellent reply and I agree. DaTscan is inferior evidence to what you already know. Plus there is a bit of radiation involved. No point to the exercise of doing this test.

[Kia17]

DaTScan is a very useful tool to differentiate between wide ranges of neurological diseases specifically for people with the young onset.

I have done it once and will do that again if necessary. The simple differentiation is between Parkinson’s disease and Primary dystonia or Dopa Responsive Dystonia in which have similar clinical manifestations but different pathology to the PD.

[Wilso77 in reply to Kia17]

I don't believe I have either of those conditions as I have parkinsons symptoms as listed above but yes perhaps that's what he wants to rule out by doing the scan.

[Leslim in reply to Kia17]

Is it the same as a MRI scan of the brain?

[Kia17 in reply to Leslim]

No it’s not. It only evaluates the Dopaminergic neurons activities located in the Substantia nigra.

[fifthbird in reply to Leslim]

Also, an MRI doesn't use radiation and the DaT scan involves an injection of some radioactive material before the scan.

[NellieH in reply to Kia17]

What difference does that make to treatment?

[Kia17 in reply to NellieH]

When the diagnosis is different the treatment will be different too.

[NellieH in reply to Kia17]

That's what I wondered and still do: what will the difference be, especially if she's responding to the c/l?

[Kia17 in reply to NellieH]

The simplest one is Dopa Responsive Dystonia.

[Gioc]

I understand your state of mind, because more or less we've all been there. Sometimes life is a question of a Point of View (us) from which a space to look at extends and where there are interesting things to do (life).

A diagnosis of PD narrows our space a lot and this is the most painful thing because it is a loss. But the greatest creative ability is our ability to look, look forward and find new space, action and life with the people we love and beautiful again.

So don't worry, knowing for sure is always greater than the slightest doubt and allows a spiritual faster recovery.

The objective examination combined with the other indicators will give you a knowledge that is higher certainty, a new point of view and a new life, what will it be like?

In my opinion a lot depends on you and your ability to stand in front of it and look again.

Certainty makes it easier.

[KERRINGTON]

I agree with you. There is no reason to get it, and you'll save your self a lot of aggravation, and stress over just the whole day.

[Seamus6 in reply to KERRINGTON]

Same here, I was offered it, couldn't see the point (quite invasive and I'm not great with confined spaces)...

[kaypeeoh]

I wanted it because I didn't believe I had PD. I worried I might have something more serious. But the scan showed positive for PD. At first I didn't think I was sick and then I didn't like the effects of Sinemet. So the neuro just rx'd Rytary. My only symptom is dominant hand tremor. The neuro saw mild signs of weakness on my left side. Not bad enough that I can feel anything odd. If I'm not focused my left foot drags a little. Not enough to be a problem. So if the new drug doesn't help I'll quit and live with the tremor.

[glenandgerry in reply to kaypeeoh]

What new drug is that kaypeeoh?

[kaypeeoh in reply to glenandgerry]

Rytary is carbi/levodopa but the doctor says it's a form that levels out the absorption. I don't have symptoms other than left hand tremor but so far it seems to help.

[glenandgerry in reply to kaypeeoh]

Ah right, we are in the UK, Rytary is not available here

[lenamm]

I had a diagnosis of primary dystonia, DAT changed that to PD. In your case I don't see a reason to do it.

[Hidden]

I’m 45 and in a similar situation but with more symptoms. I cancelled my neuro appointment.

[Despe in reply to Hidden]

Why did you cancel It? My husband cancelled his which was on March 4 as they wanted a telemedicine appointment, and he and I wanted a personal one. Not that we expected any miracles, just if PD has progressed. However, they offered an appointment with a nurse practioner, but we declined as my husband hasn't been seen by an MDS for more than a year (15 months). Vanderbilt schedulers put him on an appointment cancellation list. We are seriously thinking to have my son drive us down to Mayo in Jacksonville where he was originally diagnosed. No waiting lists there to see an MDS there.

[JohnPepper]

Exactly! The only benefit could possibly be is that you might possibly have a different form of Pd. AS there is no medical treatment known to reverse the symptoms you know you already have, then I see no benefit whatsoever, for the patient.

Reversing those symptoms by getting fitter and producing more dopamine, you are at least going in the right direction; getting better instead of slowly getting worse!

[Wilso77 in reply to JohnPepper]

Thanks John

[NellieKane]

I am allergic to the dye used in the scan so instead had a skin biopsy that I believe is a fairly new method. Easy to do, less expensive and insurance covered. For me it was what I needed to finally accept my diagnosis.

[Gratitude60]

My understanding is that it is helpful to differentiate between PD and essential tremor, and is used to confirm the clinical findings upon examination. Since you had the classic PD symptoms and CL is addressing those, it really is an unnecessary test.

[fifthbird]

Hi Wilso77: From what you're saying here, I don't think I would do it if I were in your situation. Why spend the money and take in the radiation if the diagnosis is so clear and you feel settled with it? I think I'm going to have a DaT scan in a couple of weeks because everyone agrees my case is atypical -- the absence of most symptoms considered PD hallmarks plus a lot of unexplained pain. My only PD symptoms are mild bradykinesia on one side and some generalized stiffness and slowness. Sinemet does seem to help with that, and with my energy and mood, but it's all still so vague after 1.5 years that I'm leaning toward accepting the offer of a scan. My insurance will cover most of it, but I'm still a bit hesitant about being irradiated. 😐

[MBAnderson]

I cast my vote with kevopd, Lena and the others who say it's unnecessary. (You might want to email him/her this thread and hint that anymore questionable advice and he/she will be voted off the island.)

[Wilso77 in reply to MBAnderson]

🤣

[bbc680]

It seems like the DAT is used more in UK than US. Is this true?

[jlmerten]

I was diagnosed at age 34 with PD and had a DAT scan 8 years later when a new neurologist (My 5th--I moved a lot) requested one to determine if there was something else at work in the Parkinsonian family but not idiopathic PD. Perhaps Dopa Responsive Dystonia because I'd been on Dopamine for all those years plus Azilect, agonists, and Amantadine. The test confirmed neuron loss and changed nothing in my treatment plan. My sense was that this doctor, as almost all of the neuros I'd seen, could not make my diagnosis cohere with my age, and didn't want to get it wrong--or thought someone else had gotten it wrong. (One thing I've consistently read is that DAT scans are often more for the doctor's reassurance of their diagnosis than a material help for patients.)

I admit seeing the result was strange. I was told your dopamine receptors are shaped like commas and when I saw my screening slide, my doctor pointed out how I was missing the tails of my commas, worse on one side than the other. At first I was a bit shocked and depressed despite being 8-9 years in. I realized that some part of me was in denial still and that visual made it inescapable. However, I eventually became glad I'd done the test. It helped me settle in to making some real changes mentally and with diet and exercise. I tried to turn the experience into scientific curiosity and to work on mental exercises to imagine "stabilizing" or "repairing" my missing tails.

After making some major diet changes and dropping a couple of drugs, I am doing better now 12 years in than I was years ago. I wonder now if another DAT scan would show any improvement or at least a stable plateau. That might not be the way to think about this procedure since it is intended as diagnostic but emotionally it helps me focus on a visual as I try to stay positive and do everything to maintain the plateau. To be honest, I don't know how I would feel about seeing the loss so early in my diagnosis but I think you're right to consider the psychological in your decision. As many have noted, there is small chance it will change your diagnosis or treatment (unless your doctor feels strongly about a particular other option) so I think you have to ask yourself whether a physical document of your loss is a positive marker you can do something with or an emotional risk you're not ready for.

You can always wait, get it a few years later...

[Wilso77 in reply to jlmerten]

Thanks so much for your opinion it's much appreciated. What exercises do you do and what diet do you follow?

[jlmerten in reply to Wilso77]

I hike, run (not like I used to but still...) take my dogs on walks, and during Covid I got a water rowing machine. I also do some yoga and stretch. Stretching helps a great deal. Every movement specialist I've seen has strongly recommended intense exercise and called it "the only non drug treatment that can slow disease progression". I notice a big difference in mood and if I'm consistent with exercise, I can lower my Levodopa amount. There are targeted workouts for PD like boxing and dancing which are great because they provide an exercise routine that keeps your brain working, your muscles working, and challenges you to also focus on balance and your sense of body movement in space. Biking is also excellent. I have friends who have made great improvements just getting a stationary bike and making it a consistent part of their routine.

Many of my PD symptoms started with gut problems. Probably the biggest improvement I've noticed over the years has been a serious diet change. I try to eat few processed foods, very little alcohol, and no dairy (which for me is a killer). I also eat very little meat bc the protein blocks the absorption of Levodopa and takes longer to digest. I feel best when I prioritize vegetables, dark fruits, foods with basic ingredients. I do everything I can to reduce my sugar intake which really messes me up. (I love Hail Merry coconut/cashew based cookies and deserts.)

In terms of supplements the biggest help for me has been vitamin D (which many people with PD lack in optimal levels), B vitamins, but especially amino acids. I take NAC and L Tyrosine. There are some very knowledgeable contributors on this site who can offer better specifics on supplements but I would emphasize that nutrition is key when dealing with PD so it's helpful to have a neurologist who is supportive of exploring this with you.

One of the hardest things with PD is that so much of treatment is experimental and needs constant adjustment. It can be time consuming and frustrating, but if you can get behind doing research and talking with others as you are here, it also can be empowering. I've made more progress on my own than with any specialist--not that they aren't needed--but PD has many angles and some you have tackle on your own or within other fields.

Sending you support and best wishes.

I

[beehive23]

i have had early onset pd since 33, im 53 now...............DAT is still statistically inferior to an experienced mvmnt neuro which in the states has a >80% reliability. they do it to pay for the CT machine............

[beehive23 in reply to beehive23]

they lie to make the hospital $$$$$$$$$$.................

[AaronS]

Hi, it seems your meds helping you out answered your queries. Hey how good/weird did it feel the first time you took them... kinda stressful that it confirmed PD but awesome to get relief from your symptoms?

[Wilso77 in reply to AaronS]

My neurologist didn't mention parkinsons or tell me what I was taking when he prescribed Sinemet to me which I now in hindsight think was not very honest of him. I actually realised what I had by googling what Levodopa was. To say I was shocked and upset when it slowly dawned on me that I had parkinsons is an understatement.

[kevowpd in reply to Wilso77]

Ive often wondered about that, i.e whether it occurs (the doctor doing the CL test without explaining it) and how frequently. I wouldn't want it to happen to me. My Neuro was very open from the get go, though for various reasons the process was a slog.

It does seem a bit opaque, and there is the pretty obvious risk that you will Google it.

OTOH, maybe they wanted you to give unbiased feedback on how effective it was?

[AaronS in reply to Wilso77]

Damn..that was very dirty, my neurologist was also really poor, she just said take these pills and call me if it gets worse....funny it got worse and I was given madopar.

I actually understand where your coming from

[Gioc in reply to Wilso77]

well that's just not done. It would hurt less if he suddenly threw you down the stairs.

IMHO The solution is always the same: Look ahead, a little further, then a little more and so you will have a new space and Life even with the PD.

[faridaro]

May be it would be good to ask the doctor if DATscan results could lead to a change in therapy? As some members stated I would be concerned about radiation exposure - "The amount of radiation exposure is in the range between a chest X- ray and a chest and abdominal CT scan" (from mjfox website)