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Lorit249

Just had MRI

15 posts in this topic

went for the MRI the MDS ordered tonight.  They injected me with something - had no idea that they were doing that.  I asked if I t was a DATScan and they looked at me like I was crazy - "A what?"  Oh well...they took about six scans and then did the injection and one more scan.  I go to my Primary doc Monday so should have the results - both terrifying and a relief I think at the same time.  Thought I'd post an update....be well everyone.

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The injection was for a contrast dye.  When I had my diagnostic MRI they did it without contrast dyes.  

 

There are only a few specialized places that do DATScans.  It requires a PET scanner, which is a totally different technology than an MRI.  The MRI is looking at your brain structure.  It will show any lesions that would signify things like MS or ALS.  It will also show any tumors or evidence of bleeds/strokes.  By contrast (pun intended :P) the DATScan uses a radioactive tracer to look at how much of the brain is still taking up dopamine.  The PET scanner reads the concentration of that radioactive tracer to map where it goes in the brain.

 

Edit to add: If you have PD (with no co-morbidity, or if you are perfectly healthy) your MRI will come back totally normal.  So, unless there is some reason to expect an indication of MS, or a tumor, or bleeds, you will most likely get a clean bill of brain from the MRI folks.  PD is not detectable on an MRI, or even a standard CT scan.

Edited by stump
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1 hour ago, Lorit249 said:

Thanks Stump - so its rule out everything so it must be PD...

Well, to let my pedantic side show a bit (more), a clean MRI in your case doesn't mean it must be PD.  It just means it isn't MS, ALS, tumors, or strokes/bleeds detectable by MRI.  

 

PD still requires you demonstrate the required clinical symptoms of bradykinesia plus one or more of resting tremor, rigidity, and postural instability.  Many MDS's still won't Dx without some additional item like a positive DATscan, or positive response to Sinemet, especially in younger patients.

 

I think my MDS still says "probable PD" because it's only been less than 2 years that I've been seeing her.  A couple/three more years and if nothing is causing her to doubt the Dx she'll drop the "probable".  

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"PD still requires you demonstrate the required clinical symptoms of bradykinesia "

Is that right? I don't have any bradykinesea. I do show a tremor, and a positive DATscan. I'm not sure that bradykinesea is a absolute necessary requirement.

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1 hour ago, MusicMan said:

"PD still requires you demonstrate the required clinical symptoms of bradykinesia "

Is that right? I don't have any bradykinesea. I do show a tremor, and a positive DATscan. I'm not sure that bradykinesea is a absolute necessary requirement.

http://onlinelibrary.wiley.com/doi/10.1002/mds.26424/full

 

Yes, it is a requirement.  You may just have very mild bradykinesia such that you don't notice it.  Though your doc probably does even if they say it's not a problem.  Not that it's not there, just that it's not a problem.

 

DaTscan is not an inclusive criteria when positive, but is an exclusion criteria when negative.

 

All that said, we do have New Normal with multiple docs saying clearly PD, but multiple negative DaTscans.

 

 

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Hmmm.....I actually saw our forum doctor, Dr Okun, who last time I saw him, made his assistant verify that I indeed had a positive DATscan, because I really showed nothing but a right hand tremor. None of the three MDS doctors I've seen have said anything about any bradykinesia, but maybe they're just not telling me everything.

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Hi MM-

Interesting discussion.  Has Sinemet helped you with tremor?  I find it really curious that you don't report any other symptoms.  What about non-movement symptoms?  I have also been told that a positive Datscan is not conclusive for PD.  I've been offered the scan three times by three different MDS but declined as the medication has a profound positive effect on my symptoms and I don't see any point in wasting money (mine or insurance) on a scan.  Gardener

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5 hours ago, stump said:

DaTscan is not an inclusive criteria when positive, but is an exclusion criteria when negative.

All that said, we do have New Normal with multiple docs saying clearly PD, but multiple negative DaTscans.

New Normal is now saying that she has been diagnosed with Parkinsonism, not PD.  That is clearly consistent with her multiple negative Datscans.

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I think the definition of PD may change as we learn more.  So many folks have non motor signs before motor signs often for years which would not technically fall under PD but clearly is early PD.  As we figure out how to diagnose earlier we will have to modify the definition or call early Parkinsons something else.  

I really wonder about the dat scans.  My PD motor symptoms came on over an hour.  I was 100% normal motor wise at 3pm and had full blown PD on my left side by 4pm - full on tremor 100% of the time I was still, inability to move my left toes and extreme fine motor lose in my left hand and muscle spasms and rigidity.  Nothing happen during that hour and my guess is my dat scan that morning would have been the same as that evening - probably abnormal (it was done 20 months later  so I'll never know).  So did I have PD with no motor signs that morning - probably.  

We all are so different it is hard to put us in any kind of category.  It may be that we separate out some of the types of PD into separate disease as we go on.  I know my PD from LRRK2 is already called PARK8 and that we tend to progress a little slower, don't lose our sense of smell  and don't get dementia but often have more pronounced motor signs.  It may be that we have a few different but very similar diseases. There is still so much we don't know!    

Edited by lenamegan
wrong months

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4 hours ago, PatriotM said:

New Normal is now saying that she has been diagnosed with Parkinsonism, not PD.  That is clearly consistent with her multiple negative Datscans.

Fair enough.  I don't recall reading that, but I also only read a fairly small fraction of posts on this forum.

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On ‎5‎/‎8‎/‎2017 at 10:12 PM, stump said:

The injection was for a contrast dye.  When I had my diagnostic MRI they did it without contrast dyes.  

 

There are only a few specialized places that do DATScans.  It requires a PET scanner, which is a totally different technology than an MRI.  The MRI is looking at your brain structure.  It will show any lesions that would signify things like MS or ALS.  It will also show any tumors or evidence of bleeds/strokes.  By contrast (pun intended :P) the DATScan uses a radioactive tracer to look at how much of the brain is still taking up dopamine.  The PET scanner reads the concentration of that radioactive tracer to map where it goes in the brain.

 

Edit to add: If you have PD (with no co-morbidity, or if you are perfectly healthy) your MRI will come back totally normal.  So, unless there is some reason to expect an indication of MS, or a tumor, or bleeds, you will most likely get a clean bill of brain from the MRI folks.  PD is not detectable on an MRI, or even a standard CT scan.

I had normal MRIs for years, but the DATScan I the only real proof of PD.  I had several physical symptoms, but the DATScan took away the doubt.

When I first had serious symptoms, I saw a Neurologist who gave me an MRI and said everything was fine, so I must be ok and left it at that.

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On 5/8/2017 at 11:48 PM, stump said:

Well, to let my pedantic side show a bit (more), a clean MRI in your case doesn't mean it must be PD.  It just means it isn't MS, ALS, tumors, or strokes/bleeds detectable by MRI.  

 

PD still requires you demonstrate the required clinical symptoms of bradykinesia plus one or more of resting tremor, rigidity, and postural instability.  Many MDS's still won't Dx without some additional item like a positive DATscan, or positive response to Sinemet, especially in younger patients.

 

I think my MDS still says "probable PD" because it's only been less than 2 years that I've been seeing her.  A couple/three more years and if nothing is causing her to doubt the Dx she'll drop the "probable".  

I was under the impression that everyone diagnosed with PD has a "probable" diagnosis until death.  The only way to truly determine if the patient had PD is an autopsy of the brain.

Statistically, I believe a trained neurologist has a very high accuracy rate of PD diagnosis, especially as the disease progresses. 

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On 6/21/2017 at 0:48 PM, afroney said:

I was under the impression that everyone diagnosed with PD has a "probable" diagnosis until death.  The only way to truly determine if the patient had PD is an autopsy of the brain.

Statistically, I believe a trained neurologist has a very high accuracy rate of PD diagnosis, especially as the disease progresses. 

It is true that they can't diagnose with 100% absolute certainty other than through brain biopsy after death.  That said, I think the "probable" Dx has more to do with wanting to follow a patient for long enough to be sure before putting the formal(ish) stamp on the Dx, as once they reach that point the odds of being wrong are tiny.  I think that once you are >95% confident in the Dx there's little point in saying it is still only "probable PD".  

 

Besides, if I went to a disability insurance company looking for a new policy I don't think they'd give me a pass because my doc said "probable PD" rather than "PD."

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19 hours ago, stump said:

It is true that they can't diagnose with 100% absolute certainty other than through brain biopsy after death.  That said, I think the "probable" Dx has more to do with wanting to follow a patient for long enough to be sure before putting the formal(ish) stamp on the Dx, as once they reach that point the odds of being wrong are tiny.  I think that once you are >95% confident in the Dx there's little point in saying it is still only "probable PD".  

 

Besides, if I went to a disability insurance company looking for a new policy I don't think they'd give me a pass because my doc said "probable PD" rather than "PD."

Their pre-existing condition clause is written so vaguely that a simple tremor or report of gait issues to a physical therapist would exclude you from claiming under a new policy.  PD wouldn't even have to be suspected.  At least, with my policy. 

 

 

 

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