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johnbonifer

dat scan or all in head

44 posts in this topic

Christie;

Thank you for the clarification. I wish that difference had been specified in the article, as most of us as patience, not only wouldn't know the difference, we wouldn't even know that there were more than one type of scan having the same common name.

 

Basically, it would have been much more accurate, since the article was directed at us the patients, to have specified exactly WHAT TYPE of PET scan was being referenced. I'll be the first to admit that I don't know everything.... lol, but I "do" respect your knowledge, and will sit back and defer.............

Edited by graflexmaster

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Ya I know what your saying. . Tge post synaptic would be the one recievingbthe dopamine.. the review will be done on the post synaptic.. right?

 

My worry is if the datscan is accurate.. add to the fact tgat I only have close to two years of known symptoms... maybe I dont have much dopamine loss yet and it will not show.

 

Bills, different radioligands (binding to different receptors-presynaptic and postsynaptic) are required for presynaptic and postsynaptic dopamine imaging, respectively.

Radioligands used in Datscan bind ONLY to the presynaptic dopamine transporter protein (DAT). Therefore there will be no postsynaptic images to review.

 

Don't worry about anything  ! Good luck, and remember that a negative Datscan is always good news. Studies have consistently demonstrated that patients with clinical signs of PD and negative scans (SWEDDs...Scans Without Evidence of Dopaminergic Deficit)  seem to have a much more benign form of parkinsonism, with minimal degeneration  and  slow disease progression.

 

Christie;

Thank you for the clarification. I wish that difference had been specified in the article, as most of us as patience, not only wouldn't know the difference, we wouldn't even know that there were more than one type of scan having the same common name.

 

Basically, it would have been much more accurate, since the article was directed at us the patients, to have specified exactly WHAT TYPE of PET scan was being referenced. I'll be the first to admit that I don't know everything.... lol, but I "do" respect your knowledge, and will sit back and defer.............

 

Thanks Michael. You are absolutely correct -I myself forgot to mention this- the article should DEFINITELY be more specific as to the type of scan used any why levodopa affected the images....This information has little to offer anyway, and could have been omitted...

 

It's very  confusing to the readers, who, as you said, are just patients and cannot possibly know the difference between presynaptic and postsynaptic dopamine imaging....

Edited by christie
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Thanks Christie, I spent a fair bit of time researching the differences between Pre and Post synaptic imaging, so now I understand the differences.

Yup, if I keep this research up, in another 50 or 60 years? I'll have me a self-taught med degree......... but of course, there's a good chance that I'll be dead by then, so don't anybody hold your breath waiting.......... <snicker>

 

I will say this, although over the course of the disease, PD may take many things from me, but I will NEVER allow it to take away my inherent thirst for knowledge!!!! The day I have to give up my books? is the day you can put me in a box!!

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I recently had a DatScan done.  It was slightly asymmetric, however I was told I don't have it.  I asked my doctor why the meds seem to work?  You guessed it Placebo effect.

 

So I sit here and watch my hand tremor and wonder why I had so much more ability to move when on Levadopia.     

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Wow Eddie, that is awful! My Dr. won't try it for that same reason. But how long can a placebo effect last anyway? And how about this, who cares! If it's making us feel better so freaking what!! I'll take the lie any day over the hell I'm living now. Sounds like you would too.

Just know you are not alone, there are a few of us here. Welcome to the forum and good luck!

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I went through an entire year and a half of tests. One after the other. Clinically diagnosed by my neurologist he scheduled a Datscan. It came back ok which completely blew my neurologist away. He was 98 percent sure that it was and I was taking medicine that was helping. Too bad it makes me violently ill. So I went to his requested motion specialist who even said this looks just like Parkinson's. He sent me on my way back home (5 hours away) stating the Datscan said it was ok. Of course he didn't look at it. So back to the neurologist who added the Neupro patch and that helps a lot. In the meantime we were sent to Emory. Sane thing. The Datscan was ok so it should be fine. He set me up with the motion disorder specialist and the did a test that involved a ton of little balls on specific areas a lot of cameras and voila you could turn me into a cartoon.

 

That test alone said it was Parkinson's. Go ahead and distract me make me do jumping jacks etc and the tremors stayed where they were. They reviewed the data for a while and in the carpool lane I get the call straight from the mds. He said I'm positive it's PD. get your test and bring it here. He pulled the frame that showed the abnormalities. And he said that's exactly what I thought.

 

Point is. I was going crazy myself. Started seeing a therapist even though my neurologist said that's not going to stop this. And it hasn't however having my therapist is really helpful. The tests. The all in your head drove me insane. That one second opinion was what I needed. Still haven't grasped it even though I've seen it on the screen but I'm slowly understanding a lot of symptoms I've always wrote off to it being in my head.

 

I hate seeing someone else hitting the same road block. Just hang tight even though it is very frustrating.

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This is an epidemic ! It seems like more and more neurologists label patients as hypochondriacs whenever  Datscan is negative and there is no convenient alternative diagnosis in sight, or at least in their highly (?) qualified (?) "professional" brains.

 

These scans seem to be more confusing than helping. In my humble opinion, they should be used only for what they were approved in the first place: differential diagnosis between  PD  and  essential tremor. Certainly  NOT to confirm a clinical diagnosis of PD when there is little if any clinical doubt and the patient is responding well to PD medications.

Edited by christie
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If you think about it, there is a very precise list of things that must happen in order for a patient to be diagnosed with PD.

 

1. You must go to your GP at the exact moment that your PD symptoms are clearly visible.

2. Your GP must be knowledgeable enough to recognize that the symptoms resemble PD.

3. Your GP must refer you to a competent neurologist.

4. Your symptoms must be clearly on display when you see the neurologist and they better be classic PD symptoms. The neurologist must be knowledgeable enough to recognize the symptoms as PD and to differentiate the symptoms from other neurological diseases.

6. If your neurologist sends you for a Datscan, the doctor that reads your results must be competent enough to understand what he sees AND must take the time to actually look at the scan, i.e. not be in a hurry to get to lunch; not have been up all night snorting cocaine; not be preoccupied with the fight he just had with his wife, etc.

7. The Datscan results must get back to your neurologist and he must actually take the time to look at it and the results better show the classic look of PD.

 

Break any of these links and you are in PD Hell!

Edited by PatriotM
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I was fortunate to go to a neurologist who trained under Dr Okun. He ordered an MRI (just to rule out anything odd in the brain), then a DaTscan. Diagnosed me with PD, but sent me to Dr Okun for confirmation/ 2nd opinion. All this happened in a 6 week period, quick and easy.

The troubles many of you are going thru or went thru is mind numbing....

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Musicman - Did Dr. Okun then employ an L-dopa challenge in confirmation of his suspicions before starting you on Azilect?

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I feel that way too many Dr.'d are relying on the Dat scans which are interpreted subjectively, instead of taking the time to correctly Dx. the patient clinically, the way it is supposed to be done. Basically? The Dr.'s seem to want to take the easy way out, take shortcuts, instead of taking the time to do it right.

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I have to say that my GP as well as my neurologist were on the same page and both completely couldn't believe the test. After attending last weekends event here in atlanta I think the problem for a lot of us younger people is that we get extra extra care simply because we are young. I'm a very busy person and to be honest it seems that a lot of the time they are very quick to jump to stress. My neurologist and GP were not satisfied with the test and sent me to different motion specialists to confirm. Once the Datscan is read as ok they dismiss every other symptom. I even was told by one to pray more and magically all would disappear. Yep. That was an epic FAIL.

 

It's been a long and expensive stressing thing to figure out, I saw the deterioration myself on the screen when the motion dr pointed it out. The motion test was yet another way to see what my core doctors said was true. I had to refocus on my motion specialist over at Emory and said goodbye to my Neuro (which really bummed me out). He is one of the only drs who did not give up. I'm fortunate he was there encouraging me and helping to try and find the right meds that I can tolerate (still a work in process)

 

I have a great team of doctors. I even did start seeing a therapist even though my Neuro said it wasn't the stress and it is not his recommended plan to diagnose but it couldn't hurt as I trip through this battery of issues. I started seeing my therapist who not only told me that these symptoms are not in fact in my head but getting out of denial is where I need to refocus.

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I have to say that my GP as well as my neurologist were on the same page and both completely couldn't believe the test. After attending last weekends event here in atlanta I think the problem for a lot of us younger people is that we get extra extra care simply because we are young. I'm a very busy person and to be honest it seems that a lot of the time they are very quick to jump to stress. My neurologist and GP were not satisfied with the test and sent me to different motion specialists to confirm. Once the Datscan is read as ok they dismiss every other symptom. I even was told by one to pray more and magically all would disappear. Yep. That was an epic FAIL.

 

It's been a long and expensive stressing thing to figure out, I saw the deterioration myself on the screen when the motion dr pointed it out. The motion test was yet another way to see what my core doctors said was true. I had to refocus on my motion specialist over at Emory and said goodbye to my Neuro (which really bummed me out). He is one of the only drs who did not give up. I'm fortunate he was there encouraging me and helping to try and find the right meds that I can tolerate (still a work in process)

 

I have a great team of doctors. I even did start seeing a therapist even though my Neuro said it wasn't the stress and it is not his recommended plan to diagnose but it couldn't hurt as I trip through this battery of issues. I started seeing my therapist who not only told me that these symptoms are not in fact in my head but getting out of denial is where I need to refocus.

What is a motion test

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Musicman - Did Dr. Okun then employ an L-dopa challenge in confirmation of his suspicions before starting you on Azilect?

No. Him and his staff did a 1 hour clinical evaluation. I expressed that I wasn't interested in l-dopa meds yet. With just a tremor, why rush it? I asked him, "if you were me, what would YOU do?" He said he would start off with just Azilect on the presumption that it MAY handle the tremor somewhat, but more importantly MAAAAAYYYY possibly slow down the progression (although he was quick to point out that it is debatable)

Edited by musicman

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It was actually very cool. Essentially you get all in black clothes. They attach all these tiny balls that look like gray duct tape. There's an infrared system of tons of cameras in a big circle. You are the star. These balls get attached to very key points in your body. Hands, head, ankles, and even toes and fingers etc. They have u do all the usual tests with these on and the cameras create a skeleton from you that tracks if or when your tremor actually stops or in my case doesn't. You do all kinds of exercises and it watches everything. They were trying to finalize what the heck is going on through digital means. They let me see my skeleton, and through that I saw what I already knew, my right side shakes all the time, even my left that I don't always see was represented. Even during jumping jacks where you could be easily distracted obviously it captured a continuous never ending tremor.

 

Long story short, it's the same technology used to create CG characters but being used to help make what was certainly obvious already to the drs. After they analyzed is when I got the call from the dr himself who said I want to see that Datscan. He told me then that everything on that test confirmed what he saw visually. It's just that the cameras catch it quicker than the human eye.

 

When I went in he looked at the scan and pulled me over to see visually that the dopamine levels in my brain were in fact not as they should be. Voila. Honestly I'm so glad he showed me a normal brain vs my abnormal brain. I'm still kind of in denial. But the more and more I know I'm keying in to symptoms I've had for years that I just thought heck they were something everyone deals with.

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skcher98, what event did you attend in Atlanta?  I also went to Emory and was not given the attention you received, did not see an MDS.  I now see an MDS in Birmingham at UAB but would be interested in finding out who you are seeing.  Not sure how long I will want to make the long round trip drive to B'ham.

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My neurologist is the one who sent me that direction. My doctor there is Dr. Silver and Dr. Alexander is the one with the motion test, but it had to be recommended through Dr. S first.

 

There was a Partners in Parkinson's event that my husband found on the internet. It was a great source of information. He has this amazing knack of keeping me in the know. He has been on the The Michael J. Fox sites a ton and is getting me more educated whether I like it or not :)

 

The Fox Foundation does webinars too. 

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I saw Dr. Silver about two years ago right after I was first diagnosed by my first neurologist.  At that time he was not an MDS.  He seemed nonplussed and said maybe it's essential tremor but was very noncomittal.  I came away still not knowing very much.  I am glad for you that he pursued your situation further.  I am on the Michael J. Fox as well and participated in the 23andme dna testing, which said I was not likely to have PD.  Oh well. 

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