Opinions on dat scan
Dat scan: Opinions on dat scan - Cure Parkinson's
Dat scan
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Rosabellazita
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What country do you live in? It's not easy to get one done in the USA.
Usa you can get it here
I just donot want radiation pumped inside me for 6 hrs plus another medication for ur thyroid!
My doctor doesn't feel it is necessary. Does your doctor recommend it? He never said anything bad about it, but his theory is if the dopamine stops the symptoms then the diagnosis is clear and there is no need for it.
This new dr. I went to first time did. I donot want. It. Im in process of switching to another neuro i guess. I need a diagnosis.
Yes you can, but some insurance won't pay for it and it is very expensive so do some checking on your plan.
I did. Medicare pays for it. I dont want to do it
Thats what i lije to hear..and why do u suggest against it?
My son who is 54, going on 55, had a DatScan August 14, 2015. It was recommended by his Kaiser insurance Neurologist (Los Angeles). My son did not believe he had Parkinson's. He paid out of pocket for a UCLA consult. UCLA Neuro stated they could not confirm PD as his symptoms were still questionable. To resolve my son's skepticism he took the Datscan. It came out positive. The Datscan was probably instrumental in my son receiving DISABILITY RETIREMENT.
It did not take long. He did have to swallow a radio-active isotope (?).
I believe in asking.....if you can get past the fear.
I understand the dat scan would be a faster way to get a diagnosis but cant one get a diagnosis without one?
Rosabellazita, I believe one can always get a DX. The question is "Do you accept the validity of the DX and where's the objective proof?" If you are comfortable with your DX, that's good. My son questioned his....hence the Datscan.
like most people with young onset pd in my country i had a dat-scan to confirm the diagnosis. the procedure was pretty unspectacular, didn't have any side effects (short term, can't be certain about long term, of course).
it's probably not absolutely necessary, but i'm really glad i got the scan because it provided immediate diagnostic certainty. (i know it's not 100% either, but still)
I had one it was positive.after 4 yrs of seeing Drs finally a diagnosis
Before the scan..what symptoms did u have for them to go on and how long was the IV..any side effects
Hand tremors . told by 4 neurologist that it was essential tremor,they were all wrong.no side effects. Bill was $9000. insurance covered. I paid 250.
How long was the IV IN your arm .
It was a shot . was at hospital 8 hours scan was 3 minutes pain less . I had bad anxiety attack the whole day. you couldn't take meds etc
I am extremely claustrophobic and have phobia of cannula/IV plus terrible stress at taking thyroid blocker. The hospital understood and gave me a dry run the day before. Had absolutely no problems on the day of the scan and no later side effects. In U.K. had to self finance but was worth it for confirmation of dopamine depletion on left side of brain. Went at neurologist 's suggestion. Original smptoms were rigidity, no right arm swing, minor gait issue, tremor (but more like essential than Parkinson's) and anxiety.
What do u mean dry run
I was shown all equipment and had everything explained to me in great detail by the nuclear medicine staff. They were able to completely reassure me that I would be ok.
You sound as if you have the same symptoms as me .my neuro said I needed to get my head around differentiating how much of my tremor was anxiety as when anxious I tend to flap! 😃I am trying to see the funny side of this or else I'll go mad . I had a dat scan which I came out of an anxious wreck but I felt good that I'd done it the result was my dopamine levels were 70/ down on both sides of my brain I am like you though only affected on my right side
I think it is a tool. We decided against it. What if results are negative? Will symptoms just disappear? I doubt it.
I had no tremor parkinson's and multiple non-motor symptoms. At times I thought I must be crazy. I requested a DATscan that confirmed PD. I'm glad I did.
Im just afraid of having 6 hrs of radioactive substance pumped in me thru an IV then drink another type of drug for throid .
And having to lie there still for another 45min
6 hrs of radioactive substance pumped in me thru an IV .
Do you mean you think you have a continuous IV for 6hours .No way, its just a small single shot.
That is not what i read in the info they gave me. This is in va.
Well as 123leelee said its one shot.
It may be that it takes up to 6 hours to fully clear from your body.
Whatever.I declined .they gave me info on it. IV six hrs.
It helps when telling other people you have pd too. it's easier for people to accept that a test is accurate than three neurologists' diagnoses.
I had one done privately to prove the diagnosis and have subsequently had three more whilst participating in research projects. None of them left me with any side effects and because one doesn't go inside a tunnel for more than a couple of minutes it doesn't feel claustrophobic. I want to take part in research so take the view that it's worth taking the risk of any long term effects.
Hi Rosabellazita. A dat scan can only confirm your diagnosis, but that is not foolproof. It does nothing to alter the progression of the Pd.
Jan 11 went to new dr. Movement disorder specialist. Wanted me to take c/L . I donot want to take it .i have not taken it. I dont want to take anything i have to be weaned off of. All meds cause awful side effects sooner or later. I have a bad hand tremor. Right hand. Still no diagnose. Dr. Calls it a mixed tremor. I am trying natural approach. Cbd oil. 7 days so far..no change. I am high strung always...anxiety. Dr. Suggest i see a behavior specialist for anxiety. This is where i am. Any suggestions? No prescription drugs.
Hi Rosabellazita. Does your had shake while it is at rest or when you use it? I'm with you all the way not wanting to take any medication.
I took medication for 10 years before I was able to overcome many of the movement symptoms of Pd. I have now been medication-free for the past 14 years. I know I have Pd! You don't really know what you have, am I correct?
U r correct.it trembles and shake both. At rest and in use. Dr. Called it a mixed tremor..dud..you think? I could of told her that. Im fed up with doctors. If they cant write a prescription...then they cant help u
U r correct...i dont know what i have
Hi Rosabelllazita. If it is your hand shaking, have you tried clenching your fist? If so, does the shaking stop? If not, then try splaying your fingers out as far as you can. Does that stop it from shaking? If none of these works then it does not sound like Pd to me.
Keep talking to me about the action tremors.
Doesnt work
The dr. Suggested i go to this behavior specialist tomor.for anxiety. I m not sure im going...they will only write a prescription also. So why should i go. I ordered 100 mg of muncuna dopa. Guess ill try that.
I want to read ur book. But amazon only offers kindle edition
Hi Rosabellazita. PLease look at my website - reverseparkinsons.net and you can order the book. It costs $20, which includes postage to anywhere in the world.
I will def. Get it when i can afford 20 doll. Work is slow right now.
Can you explain more John, action tremor, clenching fist? What does it all mean?
Hi Hikoi. Pd can affect any movements we make without having to think about what we are doing, like walking, writing and bringing food to our mouths. I call those movements 'Subconscious'. I am able to overcome most of my subconscious movement problems by 'consciously controlling them.
When it comes to tremors, I don't have a resting tremor, although one of my neurologists says I do, but my essential tremor can be controlled by concentrating very hard on holding my hand still. I learned to paint, after I was diagnosed and painted a very detailed picture of a Cotswold cottage with all the bricks and roof tiles clearly depicted in detail.
With the resting tremor, I tell sufferers to clench their fist, which is a conscious movement, and they can all do that. When they do it, their tremor stops because they are concentrating on what they are doing. When they lose that concentration, the tremor returns. I also tell then to splay their hand out to maximum extension and that also works, So if a sufferer wants to hide their tremor, whilst sitting, they can place their hand on their thigh with the fingers splayed out, which looks quite natural, and they don't shake. Standing up it looks quite natural to have the fist clenched.
That sounds right but i cant stop the tremor for long even if i concentrate on it. Probably less than a minute.
I wonder what is the experience of others here. How long do others find they can stop their tremor just by concentrating on it?
It's not just concentrating on it it is practicing concentrating on it. Some people manage it now for long periods of time. They press their hands down on their thighs, which helps a lot.
Whats a long period? 5 mins, an hour?
i have never met anyone who can stop their resting tremor for very long no matter how much they practice concentrating.
The other problem is that to focus on stopping tremor I couldnt do anything else at all, not even have a conversation at the same time.
Cant stop mine
Maybe for a sec ...or two.thats it
You should try 200 mg doses of the amino acid theanine for anxiety (it is derived from green, black and oolong teas):
lifeextension.com/magazine/...
suntheanine.com/research/l-...
I like the following brand because it has 750 doses for 31.99 and shipping. Though 1,200 mg/day is the upper limit for theanine I have never ready any negative toxicity reports for the amino acid. It is safe.
As for taking a substitute for Sinemet/Madopar try HP-200, the product name is Zandopa, and it has been tested for PD:
An alternative medicine treatment for Parkinson's disease: results of a multicenter clinical trial. HP-200 in Parkinson's Disease Study Group.
ncbi.nlm.nih.gov/pubmed/939...
and...
Bioavailability of L-DOPA from HP-200—a Formulation of Seed Powder of Mucuna pruriens (Bak): a Pharmacokinetic and Pharmacodynamic Study
onlinelibrary.wiley.com/doi...
Zandopa can be purchased here:
duckduckgo.com/?q=purchase+...
Thank u so much
I have mucuna dopa 100 mg ordered...now which should i take the mucuna dopa or order zandopa?
Which one of theae can taken together or do i need choose just one? Prefer the one that can be taken with the mucuna dopa since i already ordered it.
First of all here is a link to supplements which naturally raise dopamine levels and the number one entry, tyrosine, is not applicable for most PD patients because of the lack of the enzyme which converts tryosine into levodopa - tyrosine hydroxylase.
universityhealthnews.com/da...
Secondly, try your ordered MP supplement and see how you react. Zandopa can be taken with your MP supplement or Sinemet/Madopar. Getting your dopamine levels correct from any source is a juggling act. It takes time and experimentation. If your MP supplement does not give you an adequate response try doubling it. Many MP supplements are 15-20% levodopa and 40-50% is preferable. Give it a go and see what happens.
Theanine will only help whatever supplement you are taking. It is one of the healthiest and safest amino acids out there.
Thank u
One neuro wa ted me to have a dat scan; however other sources stated even a datscan is not always conclusive with diagnosis. Such a frustration. For me was diagnosed with parkinsons ism with a neuro I stayed with for 5 years. After he suddenly retired it was on to the doc trek. Thankfully the ones I have now tried carbo/levo and has helped me with my symptoms. I understand a Salvia test is in the pipelines. Doc are not readily to always diagnose us but if the med helps it is a strong Indicator. I found one doctor wanted me to have a datscan and yet the other doctorsl at a teaching g hospital did not recommend it. Doc tend to differ with so many things with pd but carbo/levo seems to be the standard. I think because of all the research we are all learning and doing the best we can.
Hi Opt8. I know some people on these blogs get upset if I talk about fast walking as the only way to reverse our Parkinson's symptoms, but my feeling is that if people are taking medication for their Pd, and it is doing nothing to slow down the progression of Pd, then surely they should be interested in learning what will reverse the progression of their Pd. Fast Walking costs NOTHING, whereas medication costs a fortune, even if you get it for nothing, somebody is paying for it. Even if the medication you are taking temporarily hides one or two of your symptoms, it is not slowing down the progression of your Pd. It is possible to take medication, while doing fast walking and as the walking slowly reverses the symptoms, you can slowly reduce the medication until you are entirely off it. as I did.
Bravo! Well said
I've been sailing! Got my competent crew certification. Quite wobbly on deck. Kept going with the cbd (100mg/5ml in a vapour pipe). Maybe should increase the concentration. It's difficult to say if it does anything. Felt pretty bad in the mornings, dysphoria, but other factors at play... Seasick, lager hangover. Trying to decide if I can get my own boat, if it's the last thing I do. Sailing doesn't involve much walking. Hope you find a way Rosa
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