dac scan: went to neuro today. increased... - Cure Parkinson's

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dac scan

Rosabellazita profile image
33 Replies

went to neuro today. increased sinemet....I have never been diagnosed as of yet. wants me to do a dat scan. I don't want all that radiation and I'm very nervous in enclosed places. opinions please.

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Rosabellazita profile image
Rosabellazita
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33 Replies
Rosabellazita profile image
Rosabellazita

I don't like the idea of increasing sinemet either . I heard it causes dykensia. neuro said that's after a prolonged time.

arwenmark profile image
arwenmark in reply toRosabellazita

the idea that sinemet increases dykenesia has been proven to be false, it is the progression of the disease that causes it. To the OP I would not be concerned about the radiation, the knowledge gained by the test is worth the small risk.

Rosabellazita profile image
Rosabellazita in reply toarwenmark

Not to me. The way i see it..time will tell.

twotutts42 profile image
twotutts42 in reply toRosabellazita

I had a dat scan, it’s not enclosed at all you will be fine. It’s worth it just to get some answers for your diagnosis . If you really don’t want it done then say no... they can’t force you. Everything you do is your choice ... up to you whether you take the advice offered to you. Wishing you good luck x

Rosabellazita profile image
Rosabellazita in reply totwotutts42

I did say no.

glenandgerry profile image
glenandgerry in reply toarwenmark

From our experience, that doesn't seem to be the case as my hubby has had PD for 12 years but only gets dyskinesia when he takes Sinemet (1 tablet twice a day). We also have two friends who have had PD for 6 years, they don't take medication and they both don't suffer with dyskinesia... ...but that's just our personal observation.

Hikoi profile image
Hikoi in reply toglenandgerry

Glen and Gerry

They often call it levadopa induced dyskenesia. This is a confusing term because as arwen says it is the progression of the disease that they now believe causes dyskenesia not the amount of time on levadopa.

BUT

if you dont take levadopa you wont have diskynesia because it is the levadopa in the body that triggers the dyskenetic reaction. Depending on their age those friends who dont take medication will likely be dyskenetic very soon if they start taking meds.

Your husband will only have dyskenesia while on sinemet. If he was to stop his meds his dyskenesia would stop too.

So levadopa triggers dyskenesia but extended use doesn't cause it

Rosabellazita profile image
Rosabellazita in reply toglenandgerry

How long did he take sinemet to get the dykensia

tbirchf profile image
tbirchf in reply toarwenmark

My husband's neurologist told us last week that too much sinemet can cause dyskenesia. He changed my husband's sinemet from 1 1/2 pills 3 X day to 1 pill 3 X day and the dyskenisia is gone. Everyone can be different in their response to the meds.

Rosabellazita profile image
Rosabellazita in reply totbirchf

How long did he take sinemet before he got the dykensia

glenandgerry profile image
glenandgerry in reply toRosabellazita

My husband took sinemet for around 10 years before the dyskinesia became noticeable. Even now, it's only noticeable after he takes a tablet. Sometimes he doesn't take his first tablet until the afternoon so he has no dyskinesia for the whole morning

No diagnosis and yet you are seeing a neurologist? I would have thought that you are on Sinemet (prescribed by the neurologist ?) because you have PD. The common indicators are easily detected by the neurologist, plus a few quick tests of your muscle control. We have to be aware that there are many many forms of PD ...... It's a huge spectrum and includes many movement disorders. Any muscle, from our scalp to our toes, can be affected, and many symptoms are not visible; only felt by the individual.

We do however still get to choose our own journeys, so you are free to decide what additional tests you undergo. I trust my neurologist and after discussion of any recommendations she has made, I have followed her directions.....more or less!

Good luck.

(I live in Canada, by the way, if you're wondering)

bcowart profile image
bcowart

I had a Datscan. I was worried about the radiation as well, but was satisfied after asking and reading around that it's very little radiation. It confirmed my diagnosis although remember, nobody really knows the causes of PD. My report confirmed 'parkinsonism' resulting from decreased or impaired mechanism that transports dopamine across a synapse or something (sorry, don't recall the exact language) to the basal ganglia. I'm still trying all kinds of alternative treatments such as IV nutrients, vitamins, magnesium, glutathione, exercise, boxing, dancing, etc.

Jeansm profile image
Jeansm

I am extremely claustrophobic and cannot have a normal MRI (I travel to an upright centre) so the clinic gave me a dry run rehearsal on the DatScan equipment to help with anxiety. On the day it was not an issue and I was pleased to get confirmation of significant dopamine loss. Not pleased I had PD just a clear diagnosis.

tedhoskins profile image
tedhoskins

I suffer in confined spaces and one Diazepan 2mg tablet solved that problem,

the radiologist or you GP will give you a prescription. I haven't heard of any side effects from these scans.

Ted

Rosabellazita profile image
Rosabellazita in reply totedhoskins

One needs to have kidneys checked after having it.

Hikoi profile image
Hikoi

Rosabella

I dont think you should have a scan if you dont want one. They are as accurate as a good neuo assessment (or the other way around). Is you neuro questioning whether your symptoms are pd.? Do you get a good response from sinemet? Sometimes I wonder if all these scans are for the doctor more than for the client. (If they own the machine they will also want the business. )

Rosabellazita profile image
Rosabellazita in reply toHikoi

Neuro not sure. I only have tremor in right hand. Sinemet 1/2 three x a day doesnt improve it so she changed it to one three x a day.

Hikoi profile image
Hikoi in reply toRosabellazita

Tremor in one hand would be normal for early stage pd. you may not be on sufficient. Sinemet for it to be effective. Do you think it is PD?

Rosabellazita profile image
Rosabellazita in reply toHikoi

I guess im still hoping its not. But my dad had it. Would rather try medical marijuana than prescribed drugs. More safe. But not legalized here in va.

Donzim profile image
Donzim in reply toRosabellazita

Heredity PD is very rare. Marijuana has its own problems with regard to neurological issues. Maybe you are operating out of fear rather than courage. If you really want to address the symptoms of the illness and get as much relief as possible, you will need every tool available...a little radiation seems a small trade off for information which will help you make a plan for that. And you will need a plan.

Juliegrace profile image
Juliegrace in reply toDonzim

Hereditary PD is not that rare. My mother, her brother and I all have it. A lot of research is being done on genetic factors, including the hereditary aspects.

Donzim profile image
Donzim in reply toJuliegrace

I’d really like to read some of that research. Haven’t looked at it recently so could be out of date. I suspect that there will be a wide variety of reasons why certain people all have the constellation of neurological symptoms that we call Parkinson’s.

Juliegrace profile image
Juliegrace in reply toDonzim

Just do an internet search for "heredity in Parkinson's." Or look into the LRRK2 gene.

Donzim profile image
Donzim in reply toJuliegrace

Heredity in Parkinson's disease: new findings.

Review article

Lev N, et al. Isr Med Assoc J. 2001.

Show full citation

Abstract

Multiple factors have been hypothesized over the last century to be causative or contributory for Parkinson's disease. Hereditary factors have recently emerged as a major focus of Parkinson's disease research. Until recently most of the research on the etiology of Parkinson's disease concentrated on environmental factors, and the possibility that genetic factors contribute significantly to the pathogenesis of Parkinson's disease has been neglected. However, it has become increasingly apparent that even in sporadic cases, the disease most likely reflects a combination of genetic susceptibility and an unknown environmental insult. Moreover, the identification of genes and proteins that may cause hereditary parkinsonism substantially contributes to our ability to understand the pathogenesis of Parkinson's disease and may help in the early identification of the disease and its treatment. The discovery of alpha-synuclein mutations in families with autosomal dominant Parkinson's disease sheds light on its role in sporadic Parkinson's disease. It seems that this protein tends to aggregate when the cellular milieu is altered [14-16]. The question as to the exact changes that cause its deposition remains open. One of the major possibilities is oxidative stress [16]. The role of these aggregates in neuronal cell death is also still unclear. Transgenic mice expressing wild-type human alpha-synuclein developed progressive accumulation of alpha-synuclein and ubiquitin-immunoreactive inclusions in neurons in the neocortex, hippocampus and the substantia nigra. These alterations were associated with loss of dopaminergic terminals and motor impairments [24]. This finding suggests that accumulation of alpha-synuclein may play a causal role in sporadic Parkinson's disease as well. The parkin protein seems to be a crucial survival factor for nigral neurons [15]. The parkin protein is related to the ubiquitin pathway, which is important in the elimination of damaged proteins. Ubiquitin-mediated degradation of proteins plays a central role in the control of numerous processes, including signal transduction, receptor and transcriptional regulations, programmed cell death, and breakdown of abnormal proteins that may interfere with normal cell functions. Further studies on the function of Parkin protein and its relation to the ubiquitin pathway could elucidate at least one of the molecular mechanisms of nigral neuronal death. A mutation in the ubiquitin carboxy-teminal hydrolase L1 gene also implies the importance of the ubiquitin pathway in Parkinson's disease. Abnormal tau protein was found to be the cause of familial frontotemporal dementia and parkinsonism. It tends to form filamentous structures, which may lead to neuronal death. Elucidation of the molecular mechanism of neuronal death in this disease may contribute to our understanding of sporadic diseases with tau accumulation, such as corticobasal degeneration, progressive supranuclear palsy, Pick's disease, Alzheimer's disease and possibly also the pathogenesis of Parkinson's disease. Other genetic loci have been identified by linkage analysis of patients with familial parkinsonism. These loci conceal other genes and proteins that may be pivotal factors in the pathogenesis of Parkinson's disease. The discovery of genetic mutations in patients with parkinsonism may offer us new insights into the understanding of the pathways leading to neuronal death and development of Parkinson's disease. It may also help in the early identification of susceptible people to this disease and possibly in developing new treatment strategies.

rjpinette profile image
rjpinette in reply toRosabellazita

My husband has had PD for about 4 years now, had the DatScan done last spring to positively confirm it. He does not have any tremors at all but many of the other symptoms. He recently started the Boxing for Parkinson's and this is a tremendous exercise for PD. So glad he decided to try it. When we went to the class there were 5 men and 2 women and they were doing phenomenal movements with the exercises. Well worth the try!!

Joynb profile image
Joynb

I have not heard of any Datscans in Australia. Diagnosis is entirely clinical.

Astra7 profile image
Astra7 in reply toJoynb

I had an MRI here in Perth. I thought it was the same thing but maybe not? Showed nothing helpful, was unpleasant and frightening!

Rosabellazita profile image
Rosabellazita in reply toAstra7

Not the same. Yes they scare me

felixned profile image
felixned

I had the Datscan and it wasn't pleasant. The main problem was with staying absolutely still for almost 1 hour. As far as radiation they give you medication to protect your thyroid.

Rosabellazita profile image
Rosabellazita in reply tofelixned

Im not doing it

MGP201 profile image
MGP201

if DaTScan is negative, what is the diagnosis?

Rosabellazita profile image
Rosabellazita in reply toMGP201

It shows how much dopimine is in ur brain

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