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Who has had a DATSCAN?


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#1 NicoleZ

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Posted 06 February 2012 - 06:47 PM

Hi everyone! I am 38 years old, and was diagnosed withYOPD 4 months ago by my MDS. I had seen 3 regular neurologists with my symptoms that started about 2 years ago - balance difficulties, falling down the stairs, dragging right leg, right arm slow/weak with decreased swing, rigid neck, and then tremor in right thumb. Had 3 MRIs, a lumbar puncture, and tons of blood tests - all normal. They had no answer, and even when I brought up PD they said that would be incredibly rare and that I was too young for treatment anyway. I found a MDS a couple hours away, and after his history and exam he said he was certain I had YOPD. He started me on Mirapex ER and I have titrated slowly up to 4.5 mg per day. I am doing so much better --- the main symptom I have now is extreme fatigue, but all the other symptoms are gone for the most part. Occasionally if I am overtired or stressed my leg will drag some and the tremor will come back....but most days no one would ever guess I had anything wrong! At my initial visit with the MDS, he offered to send me to a neighboring state for a DATSCAN (we don't have one in my state). I asked him if I needed it, and he said he was extremely confident with his diagnosis and felt it wasn't necessary, and that if I had a good response from the medication that gave even more reassurance of the correct diagnosis. I have thought off and on about going to get the scan, and my family thinks I should .... but would it change anything? I assume it would be abnormal, and I'm already doing well with my medication. If it was normal, would I stop the medicine? No way, it has given me my life back! Has anyone here had a DATSCAN after they've already been diagnosed and treated? Thoughts in general?

#2 christie

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Posted 06 February 2012 - 10:57 PM

Dear Nicole, I am sure most of us have had, at some point, the exact same thoughts-dilemmas…At least I did. Should I have a Datscan to confirm my diagnosis of a chronic degenerative disease, especially prior to initiating or continuing a life-long treatment ? Should I get a second or even a third expert opinion ? Or should I trust that neuro who seems to know his stuff so damn well and trusts with such confidence his clinical opinion ? A clinical opinion which is not only logical and scientifically complete but also the only possible diagnosis left !
The main problem with the Datscan is that it does not provide a clear-cut diagnosis. It’s useful only as a tool for differential diagnosis between ET and PD , dystonia and PD and between organic and psychogenic parkinsonism. But what happens when there is no differential diagnosis issue ? When PD is the ONLY possible diagnosis ? In that case, if the scan is positive everything is clear, in accordance with the clinical diagnosis , treatment is safely administered-knowing for sure that a dopamine replacement therapy is given to a dopamine-depleted patient, and both the patient and his/her neuro have their piece of mind. BUT, and this is a great BUT, what happens if the scan is negative ? The clinical diagnosis is questioned, the neuros may be very reluctant to continue administration of the-seemingly-useless dopaminergic drugs and the patient returns to point number one, now more confused than before.
The way I see it, prior to having a Datscan the patient should discuss with his/her neuro what is expected from this test and what would be the exact clinical impact of any possible result. If the diagnosis is clinically certain and confirmed by more than one expert AND the patient responds favorably to medication I don’t think there is much point in having a test which cannot exclude 100% the possibility of PD, and has no impact on prognosis and treatment decisions.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#3 newbob10

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Posted 07 February 2012 - 10:16 PM

Nicole,
I recently had a DATSCAN (a couple of weeks ago). I have had tremor, speech, some cognitive issues at times and extreme fatigue, but no rigidity to the point where my neurologist could give me a clinical diagnosis (for a couple of years now). All other testing has been "normal" (MRI, EMG, endocrine, etc), so she ordered the DATSCAN to give some explanation to the symptoms. My results were normal - no dopamine deficiency. This theoretically means no PD for me - great news right? Sort of. I'm still trying to figure out what's causing all of my symptoms and that is still quite frustrating. Having said that, I am happy to have the information. If nothing else, it's a baseline to look back on in a few years if I'm still trying to figure it out. At this point, I'm still on the medication that I was on before the scan (Amantadine and Clonazapam). My MDS didn't think there was any reason to stop taking something that was helping.

So - I'm not sure if that's the kind of anecdote you were looking for. I think every person and every MDS is going to handle things differently. I would take Christie's advice and make sure you know what different outcomes would mean to you and your treatment and decide from there how much the added information might mean.

I wish the best for you.
Bob

#4 carol42

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Posted 07 February 2012 - 11:06 PM

i got a datscan also came back normal,tho mine was over a yr ago....wat does the amanitie help with Bob?...thanks

#5 newbob10

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Posted 08 February 2012 - 12:33 AM

i got a datscan also came back normal,tho mine was over a yr ago....wat does the amanitie help with Bob?...thanks



Carol, the Amantadine has helped with the tremor, but the best benefit I've gotten from it was the help for the major fatigue. By helping the fatigue, I think it's indirectly helped the other symptoms. Stress still wins out sometimes, but for the most part it's helped a lot.

Have you gotten any diagnosis that explains your symptoms?

#6 carol42

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Posted 08 February 2012 - 11:33 PM

no i hav not Bob,she admits i hav right sided stiffness and slowness of walking,she thinks im depressed which is maken my tremor worse and wants me to see a shrink! she is taken me off mysoline that ive been taken for over 20 yrs and putting me on lyrica which is something similar,ive to see her in 3 months time,but dont know how im going copr with tremor increase till then,i hav only reduced my mysoline by half of 1 tablet and i feel more stiff and my hand tremor has got worse,so im left up sh*t creek!.... :huh:

#7 Shaky Spice

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Posted 15 February 2012 - 04:17 AM

Bob, Nicole, anyone here who has been offered a DATScan.... take it!!! It is acknowledged by the American Assoc of Neurology that up to 30% of people diagnosed with PD are responsive to anti-PD meds and they do not have the disease. Trust me you want to know up front that PD is indeed what you have because the meds can be addictive (the dopaminergics) and near impossible to stop. Nicole if your doc orders it your insurance will likely cover it. Most of us have to pay out of pocket to the tune of a couple thousand bucks.

Bob,


FIrst rejoice you don't have this but please if you can get an apt at a Parkinson center of excellence like Cleveland Clinic or Mayo Clinics. Early PD will still show dopamine loss because technically by the time any motor symptoms appears you should show loss of 60-80% in a scan. Have you been tested for Lyme Disease; untreated Lyme can manifest like Parkinson's depending on what part of brain is impacted. There is also a gut bacteria associated with PD called H. pylori; research shows that some people who treat the infection greatly reduce or even reverse mild symptoms.

Many other things can look like PD so think of environmental exposures too like Manganese dust from welding, or exposure to well water. Carbon monoxide poisoning can cause Parkinson like symptoms.

I may sound over zealous, but I am angry that I was, unbeknownst to me, put on a PD watch list . I was first diagnosed, and treated for Essential Tremor for 5 years from age 36 to 41 when I graduated to PD. If I had known for sure that's what I had, I would have done things much differently like improved my diet and exercised more instead I worried and stressed all that time denying other symptoms that others started to notice. Stress only makes us worse.

Finally, not sure if your docs asked you about any super early on non-motor symptoms that are common among us: Anxiety or depression may be one of earliest signs, painful foot cramps, any weird change in bowel habits (usually constipation), loss of or impaired ability to smell, and a sleep disorder where you act out your dreams....

Good luck to you both!

Laura
“My destination is no longer a place, rather a new way of seeing”
Marcel Proust

#8 christie

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Posted 15 February 2012 - 05:50 PM

Bob, Nicole, anyone here who has been offered a DATScan.... take it!!! It is acknowledged by the American Assoc of Neurology that up to 30% of people diagnosed with PD are responsive to anti-PD meds and they do not have the disease.


Laura hey! So nice to hear from you.
Well, about that 30% false positive rate...Depends on the expertise of the diagnosing neuro and-mainly-on the length of the follow-up. Getting smaller and smaller with increasing follow-up time. Time will invariably tell what the correct diagnosis is (some neuro has said that, but i fail to recall his name)and clinical diagnosis at 2-3 years follow-up remains the "gold standard" for the diagnosis of PD. And what if some of these patients do not have "PD"? Why should they stop taking the drugs that help them function normally ? Dependende on dopaminergic drugs is an important issue of course, but it does not preclude their therapeutic use, even when there is no imaging evidence of dopaminergic deficiency.
I'm not saying that Datscan is not a great tool. Probably the best we have. BUT it can be tricky, and should be interpreted with caution. And there's no doubt that it's absolutely great to know for sure what you have. No "what if", no neuro looking at you with the i'm-not-convinced-you-have-PD look ! BUT the problem with Dat is that by the time it's ordered an extensive work out of the patient has already been carried out. And although a positive scan leaves the patient with the certainty of a diagnosis, a negative result leaves him with no diagnosis at all.

Edited by christie, 15 February 2012 - 05:51 PM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#9 AnthonyB

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Posted 14 May 2012 - 06:12 PM

I had a DATSCAN a few weeks ago after a clinical diagnosis for PD.
I got the results but have yet to see my doctor, the results showed no uptake on the right side of the brain and very little on the right side so in my case it shows something going on.
The test will take most of the day because of the long wait time between being injected and the scan.

#10 Father's daughter

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Posted 15 May 2012 - 08:52 AM

I had DATscan last week, received results the next day, not the results I wanted, but I was glad I had some answers. I don't know If I would've had scan if I was already receiving treatment and responding well...it is very difficult to get some healthcare providers to listen sometimes and youbwonder if you have scan and is negative will they then want to take you off the meds that are obviously working.

I had a hard time at work yesterday, I am a nurse and a patient had a question for the doctor, when I requested that the doc go speak to the pt he said he already had and he already knew the answer to the question......the pt said it was okay, he didn't really need to talk to him................my problem is now this, I have always considered myself a strong pt. Advocate and I only work with this doctor once a week,but I am afraid if this happens again I will be getting arrested for dragging him by the hair of the head to the patients bedside...why don't some providers understand how important it can be just to talk to patients?

Anyway, that is what I am craving, someone to talk to me about this Parkinson's. I will be going to the University of Alabama at Birmingham soon and hope they will help me through this journey.

I also want to say thanks to everyone who posts here. It helped me a lot to visit this site the last 6 weeks while I was waiting for my first neuro visit!

Thanks,
Melinda

#11 christie

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Posted 15 May 2012 - 05:31 PM

Melinda welcome ! You are a nurse, wow, that's so admirable. your job is wonderful and you sound like a person who truly cares about people...Yeah, that doctor should be certainly dragged (by any body part available, hahaha) not only back to his patient but also back to medical school. some doctors don't understand nothing at all. they think they are the untouchables or something, existing only to anounce good or bad news (but always in the same insensitive manner) to people whose suffering they are unable to see or feel.
However, there ARE also some doctors willing to listen to their patients, respond to their needs and show them some humanity, but they are kind of hard to find. You should find a good neuro Melinda, who will do that for you, and reply to all your questions with patience, kindness and understanding. In the meantime, you can also try to find some useful information in this forum (the ASK THE DOCTOR section in particular is most helpful).
I hope i will see many more postings from you...

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#12 teacher0707

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Posted 26 May 2012 - 04:21 PM

I had the DATSCAN done last year at the age of 21 when it was believed that I had YOPD. The test does take all day and includes drinking a solution and an injection before hand. Being that I was the youngest and smallest patient that they had ever preformed it on they had to do the scan twice. I highly recommend getting it done if possible. I know some insurance companies will not let you have the scan done until you have a series of other tests done before hand since it costs a couple thousand dollars to complete. The scan will help your doctor make an accurate diagnosis because without it they truely can't tell what is happening with the dopamine receptor sites in your brian.




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