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Luke

DatScan questions for those who have had one...

29 posts in this topic

Long time reader, first time poster :P  Everyone's input on this board is great.  It's nice to know that I'm not alone as I sit in "limbo-land", awaiting a diagnosis, but yet I can relate all of my symptoms to almost 99% of posters.  Tremors (check), sleep disorders, RBD and Apnea (check), lack of arm swing (check), apathy (check), facial masking (check), Rhinorrhea (check), incontinence (check)....etc....

I've seen a few posts on those who have had DatScans, but I haven't seen anyone who's had a negative scan, and was later confirmed to have PD.  My DatScan last April was negative, but my MDS is stumped!  The facial masking that set in approx. 8 months after my scan is the kicker?  Only a handful of things can cause this, other than PD, and testing for Wilson's disease, etc. have all come back negative. 

So I guess I'm looking for input from those who have had a DatScan.  It's the only thing keeping my MDS from making an official dx.  The negative result was a huge relief at the time, but all of my symptoms seem to be progressing rapidly.  I can't emphasize enough how much stress this predicament has put on my family, as I'm sure most on this board can relate.  There is nothing definitively to give them answers regarding my physical and personality changes, other than a doctor who says "you have me puzzled".

Thanks in advance to all that reply!  I know this disease is tricky to diagnose, and symptoms for everyone differ.

Thanks for listening!

Luke

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Tell your MDS to read up on DaTscans and how they should not rule out a diagnosis based solely on it  

Its interesting info to have but should not be the only reason for not diagnosing you with Parkinson's 

DaTscans come with a big disclaimer and most insurance will not cover cuz it's experimental. 

 

Good luck

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I had a DATScan a couple of years ago which was deemed as being normal. 

I like most others can check off PD symptoms going back for years.

I moved, was seen by a new set of neurologists. And sent home with C/L after four neurologists spent a hour examining me, with a follow up to a well known MDS a few weeks later.

When I asked her about the normal DATScan she laughed and said she trust her experience and the gold standard four symptoms and positive response to C/L.

She also stated I should have been diagnosed way before the time I was 

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Dear Luke:  Look up posts from "Newnormal"  on this board.  She and her husband both have PD with negative DAT scans.

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Luke,

As you state in your post, there are other diseases that can mimic Parkinson's.  Are you taking any medication for your symptoms?  If you're thinking of having another DaT Scan, I would wait at least two years from the original one. Basically give the disease some time to progress. If that one comes back normal, odds are you having something other than Parkinson's.  The DaT Scan just determines if you have a dopamine transporter problem indicating that you have PD. Another disease that mimics some of the symptoms of PD is Dopamine Responsive Dystonia (DRD) but will have a normal scan.  If you do have PD, its not going anywhere.  Short of exercise, there is nothing that can slow down the progression.  Take a deep breath and try to relax.  Live your life while you still can.

Dave

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4 minutes ago, DaveN said:

Luke,

As you state in your post, there are other diseases that can mimic Parkinson's.  Are you taking any medication for your symptoms?  If you're thinking of having another DaT Scan, I would wait at least two years from the original one. Basically give the disease some time to progress. If that one comes back normal, odds are you having something other than Parkinson's.  The DaT Scan just determines if you have a dopamine transporter problem indicating that you have PD. Another disease that mimics some of the symptoms of PD is Dopamine Responsive Dystonia (DRD) but will have a normal scan.  If you do have PD, its not going anywhere.  Short of exercise, there is nothing that can slow down the progression.  Take a deep breath and try to relax.  Live your life while you still can.

Dave

Thanks to all,

Yes, I am taking Ropinirole now, and actually with some success.  I couldn't care less, however, if I walk funny or lose my balance on occasion in front of others.  It's the non-motor symptoms that are a kick in the butt.  I will not pay for another DatScan, as everything I have read points out that a good MDS should come to the same conclusion. Looking back to 4 years ago during my first appointment with a neurologist, my symptoms were so mild.  A little tremor, a little dizziness and the start of my sleep disorders.  Even one year ago, I still think most of my symptoms were minor compared to where they are now, but they were enough for my MDS to order the Scan. 

One more month before my next appointment.  In the meantime, yes, I will take a deep breath and be thankful for what I have :rolleyes:

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Hang in there Luke. 

Dont worry to much about what they call it. Just treat your symptoms. 

My first doc would have never said I had Parkinson's based on my symptoms. He gave me sinemet and when it helped, he was perplexed. "I don't look like Parkinson's "

so he scheduled the scan. 

the REAL determination of Parkinson's was realized when the sinemet worked for me. The scan was nice for a backup. 

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My DAT scan was positive but looked close to normal if you compared it to a normal scan.  But even the small difference confirmed my DX along with my symptoms. 

Good luck.  Exercise and do what works for you - PD or no PD!!  They will figure it out 

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 I've had 5 DaT scans... all negative. DH (husband) had negative DaT scan.  Both of us responded to Gold Standard for PD  by a positive reaction to L dopa.

Neuro/MDS  dx'd  DH with "Parkinsonism".  He has firm commitment to DaT scans. I asked him, why we had significant PD symptoms, positive response to l dopa...and neg DaT scans.  He smiled and said, "Sometimes it takes awhile for the scan to catch up to the disease." ( Or vise versa. )  I thought his answer was silly.  He has a great history and a list of achievements including administrating DaT scan departments for Mayo Clinic. I respect his assessment.

DH exhibits all PD symptoms but is dx'd "Parkinsonism" likely caused by Agent Orange...an herbicide used in Vietnam to defoliate miles of coastline.  He has developed neuropathy in many areas...not typical PD.  He has several additional odd diagnoses such as bilateral trigeminal neuralgia which seldom occurs ...like never. So, according to Neuro, DH does not have traditional PD, which explains negative DaT scan.

Neuro refers to my dx as "parkinsonism" also. I  am developing different symptoms from normal PD. Neuro says it is likely caused from a different part of the brain. I now understand why the term "parkinsonism" is occurring often in medical papers and MDS/neuro offices.  .  Neuro appears to be correct for both if us.

The DaT scan discussion continues. PD is unpredictable, so we never can be certain of anything...including DaT scans.. We all know it is a designer disease....each of us is unique.

Most important is to be the best you can be, exercise, find joy in every day...look for ways to help others...and the rest takes care of itself. (Smile)

Love the ones you love.

NN

 

 

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On ‎3‎/‎21‎/‎2017 at 5:30 PM, swamper said:

Dear Luke:  Look up posts from "Newnormal"  on this board.  She and her husband both have PD with negative DAT scans.

That's just not true.  According to her posts, New Normal and her husband have Parkinsonism, which is Parkinson's like symptoms caused by something else.  For example, New Normal's husband apparently has Parkinson's like symptoms due to exposure to agent orange.

According to the new MDS Parkinson's Disease diagnostic criteria, a negative dat scan is an absolute exclusion for PD.  You'll note that this criteria works perfectly for New Normal and her husband.  They both have negative dat scans and they both have been diagnosed with Parkinsonism, not Parkinson's Disease. 

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Thanks for clarifying that, nn and patriot.  I stand corrected.  Swamper

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As I was going through the diagnosing process and DatScan Process, my MDS told me that everyone who is newly diagnosed will get the label of parkinsonism till they have 5 years of history in their medical chart. Then it will switch if your disease progression stays on track with Parkinson's or one of the other not so fun disorders lead you down a different path. like MSA, PSP, ect. At my last appointment I asked about symptoms and my progression. She said that the symptoms I have and my progression so far lead her to say I have Parkinson's with %99 certainty. Since I have only been diagnosed for 2.5 year it will be 2.5 more years till I see parkinsonism disappear off my charts. She stated this was done to make sure the are keeping any eye out for anything different then the usual, she also stated that a dx of parkinsonism does not change treatment or the care I receive. Even with Parkinsonism as my current primary dx I was still accepted into the Steady PD III trial testing Isradipine for slowing the progression of the PD.

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Adams, your MDS is spot on to what I have read and understood.

"Parkinsonism" is the "umbrella" term. (Regular) Parkinson's is under the umbrella of Parkinsonism as is MSA, PSP, etc.

Edited by ellaangel2
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Do we remember when "epilepsy" was the umbrella for "seizure disorders."  Modern science is now creating subsets for many dx.

A point to remember: time lines of progression cannot be correlated with any specific person.  Even the "averages" or "mean" cannot, IMHO, be used to determine one's prognosiis.  Simply too many variables.

Example:  both DH & I can recall neuro symptoms for decades before dx. DH has had bilateral trigeminal neuralgia for nearly 30 years with over ten procedures attempting to kill nerves to his brain. Pretty serious stuff...but never associated with PD. Nor with military service in Vietnam war.  I had issues 30 years ago with bladder and bowel which fit neatly into PD symptoms. Now we learn probably neither of us have PD.

Essentially, DH & I have had pre PD symptoms for nearly 45 years.Therefore, if we calculated prognosis and/or progression, with our true numbers, the progression chart would look much different then the current ones. Am I being clear?  With our numbers, prognosis of life time or onset of debilitation could be 70 years.

OK, I write this...because I read between the lines of newly dx'd PWP who are reading alot from Dr Google...and trying to make sense of your dx.  With that, you want to predict when or if you may be compromised.  Trust me...who is the original obsessive researcher..."it don't work."  Regardless of the many white papers you digest...you do NOT know your future.  No more than you can not predict when you will be hit by a bus.

It is what it is.  PD can be your enemy or your friend...it is your choice.  You can begin each day expecting another symptom to develop...or you can awake with a list of things that may improve the life of another...which has most value?

i so "get" what you are experiencing with the new developments...and like me...and many of us...you have a passion to know all there is to know...it is SO normal.  However, as one accepts PD as a companion you may not even notice the changes because you will be absorbed in maximizing every day...you will have so many things to accomplish to enlarge your legacy..you have no time to study PD.  PD as a companion is like adding weights for your exercise plan...it helps build your strength...and in ensuing years as PD walks beside tou, you will recognize that you see your world in vibrant colors while others fail to see it at all.  You cherish the hugs.....sensing every touch...and filing into your favorite memory box...and you laugh at the silly things...and you wind up "dancing as if no one is warching"

See what NN can do do a very simple thread???? Lol  ...sorry the length and free counsel...and taking things  off topic...

Move on guys...back to Dat scans...love the effort to bring discussion here...and welcome all of you to the forum...it IS like a family...tho some of,our reunions can get out of hand...but in the end we are of the same herd. (Smile)

Love the ones you love,

NN

BTW, Patrot, Iliked your comment...this new format doesn't note the"likes" ...

 

 

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On ‎3‎/‎24‎/‎2017 at 0:16 AM, New normal said:

 I've had 5 DaT scans... all negative. DH (husband) had negative DaT scan.  Both of us responded to Gold Standard for PD  by a positive reaction to L dopa.

Neuro/MDS  dx'd  DH with "Parkinsonism".  He has firm commitment to DaT scans. I asked him, why we had significant PD symptoms, positive response to l dopa...and neg DaT scans.  He smiled and said, "Sometimes it takes awhile for the scan to catch up to the disease." ( Or vise versa. )  I thought his answer was silly.  He has a great history and a list of achievements including administrating DaT scan departments for Mayo Clinic. I respect his assessment.

DH exhibits all PD symptoms but is dx'd "Parkinsonism" likely caused by Agent Orange...an herbicide used in Vietnam to defoliate miles of coastline.  He has developed neuropathy in many areas...not typical PD.  He has several additional odd diagnoses such as bilateral trigeminal neuralgia which seldom occurs ...like never. So, according to Neuro, DH does not have traditional PD, which explains negative DaT scan.

Neuro refers to my dx as "parkinsonism" also. I  am developing different symptoms from normal PD. Neuro says it is likely caused from a different part of the brain. I now understand why the term "parkinsonism" is occurring often in medical papers and MDS/neuro offices.  .  Neuro appears to be correct for both if us.

The DaT scan discussion continues. PD is unpredictable, so we never can be certain of anything...including DaT scans.. We all know it is a designer disease....each of us is unique.

Most important is to be the best you can be, exercise, find joy in every day...look for ways to help others...and the rest takes care of itself. (Smile)

Love the ones you love.

NN

 

 

Very informative, thank you.  Just curious if you or your husband has ever had a PetScan?  My MDS brought this up as an option, but I have so far declined.  Can only pay so much in medical costs.  It will supposedly help in the diagnosis of Parkinsons Plus diseases...

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Hi Luke,

My Neuro is suggesting both DH and I may have MSA.  Which is rare beyond rare.

No Pet scans.  However, Dr Google refers to them often so your dr may be on track.  I am not a medical professional..  From what I've read, MSA and PD + originate from a different part of the brain than PD with a different process for diminishing l dopa .

 The fact your dr mentioned it suggests he knows about MSA...pet scans are not commonly ordered. Also, you must present with  enough clincal signs for him to suggest it.  I've read where brain changes can be noted in pet scans not seen with DaT .  it may be an advantage for treatment choices.  It will be interesting to know. If u can afford it...if it were me...because there is a lot of difference between MSA and PD...I would want to know.

perhaps this info may interest you: from National MSA website

"Levodopa may also cause new movement disorders, known as dyskinesias, to appear and has been associated with a lower benefit-to-side effect ratio in MSA compared to Parkinson’s disease3. A comparison study of certain brain wave patterns of Parkinson’s and MSA patients’ response to levodopa showed that MSA patients’ on levodopa displayed a level of function similar to that of unmedicated Parkinson’s disease patients2.

In practice, response of MSA patients to levodopa varies widely from patient to patient, leading some experts contend that the actual percentage of patients who benefit from levodopa therapy may be close to 40 to 60 percent among MSA-P patients, with some studies reporting as high as 69 percent, as opposed to the more widely-held belief that most MSA patients are not helped by levodopa therapy4.

Levodopa’s usefulness in Parkinsonism is limited due to the fact that the drug’s effectiveness diminishes over time, with each dose gradually lasting a shorter duration5. As a result, symptoms begin to return between doses and, in some patients, dyskinesias appear, usually in the face, neck or limbs. In MSA the decreasing effectiveness of levodopa is compounded by loss of the cells that respond to dopamine as the disease progresses.

As a result, benefits of levodopa generally wane after two to three years in most MSA patients compared to five or more years in Parkinson’s disease patients5. High doses of levodopa are also thought to contribute to the disease process in MSA, though at least one preliminary study has found this to be untrue ". 

Thoughts and prayers to you and your family.

NN

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BTW, swamper...you are right...I thought we had PD just up to a few weeks ago.  So I was on the side that DaT scans were not always correct. I am kinda confused now, because PWP with negative scans  are numerous...and it would be unusual for them all to have MSA  or PD+.

As I said earlier...epilepsy at one time was dx of numerous seizure disorders that now can be categorized.  Mental illness is now a term for many dimensions.  .With research, maybe PD will have additional subsets... which leads us to more definitive avenues for a cure. 😊👍

Hugs to u, Swamper.  NN

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Luke

Just for discussion sake...and not to allude to any of your possible diagnoses...Both DH and I have had many system disorders..even some with surgeries..that now can be termed non motor symptoms of PD.

All pieces are fitting snugly into a puzzle that has been with us for decades.  Your wise dr noticed your history of autonomic dysfunction. You're fortunate to hv an astute dr. After reading your story, I for sure would get PetScan. Note end of quote I posted, that excessive ldopa can accelerate MSA.  hmmm. After 3 yrs of dx, I take 50/200 CR 5x's a day.  I "break out" 1 to 2 hours after each dosage. I didnt tell dr, cuz I don't want to increase.. Treatment choices might have been different. Alternative treatments like stem cell tx may be more successful in a different part of the brain....which I will ask neuro when I see him.

This discussion should not ignite PWP to fear a PD subset or a different dx. We are speaking of SIGNIFICANT non motor autonomic conditions coupled with PD. This is EXTREMELY rare.  DH and I have pre PD rare conditions.  AND DH is 72..I soon will be 70.  Much more likely to have different conditions.

Luke, I wish you well...would like to know more about you..and we all appreciate signature lines that state short histories and meds. Pls keep us informed.  Apologies if I took yr thread off topic.

NN

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I have read in many places that MSA and PD + will initially show an abnormal DATSCAN, however definitive diagnosis of MSA & Pd+ may take years to confirm after initial diagnosis of Parkinsonism from DATSCAN (as Adam's MDS stated.)

This does not sound like what your MDS is telling you NN..........?

Sounds like he is saying people  that eventually get dx'd with MSA have had "normal" DATSCANS.......

Now, I'm confused........

 

Edited by ellaangel2
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To NN:

Don't worry about going off-topic.  All of your input is valuable and it seems everyone has your respect on this board.  And I've added a signature just for you B)

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Luke

I can relate to your situation.  I had a normal DAT scan a few years ago, and it took a year and 3 different doctors to finally get an Rx to do a levodopa challenge.  My neuro came to the conclusion that everything except the DAT pointed to Parkinson's, and he is willing to say "heck with the scan let's just do what we can do to make you feel better".  I've been on sinemet for almost a year now and in retrospect I wish I never got the DAT scan because it just caused a year of stress and inadequate (and inappropriate) treatment. 

As for a normal DAT being an "absolute exclusion for PD", there is a little more to the story than that.  First, so-called "scans without evidence of dopaminergic deficit", (what you and I have) are not always truly normal, because they are interpreted subjectively and humans are wrong sometimes.  (see http://www.prd-journal.com/article/S1353-8020(16)30245-0/abstract).  Second, the concept of "absolute exclusion" is clinical trial lingo.  From the MDS diagnostic criteria, the second sentence reads: "The criteria were designed specifically for use in research, but they also can be used as a general guide to clinical diagnosis of PD consequent to Lewy body pathology."  In clinical trials, researchers typically want a "pure" sample of patients, and DAT scans are an easy way to ensure some sort of homogeneity in the study group.  This is really important for research, but all it means for you is that you will probably not be eligible for some clinical trials. It does not necessarily mean that you don't have what is for practical purposes the same Parkinson's that someone with an abnormal DAT scan has.

Ed

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So, the way I see it is.......if the test "abnormal" you can believe it, if "normal" ya' can't......

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4 hours ago, benderet said:

Luke

I can relate to your situation.  I had a normal DAT scan a few years ago, and it took a year and 3 different doctors to finally get an Rx to do a levodopa challenge.  My neuro came to the conclusion that everything except the DAT pointed to Parkinson's, and he is willing to say "heck with the scan let's just do what we can do to make you feel better".  I've been on sinemet for almost a year now and in retrospect I wish I never got the DAT scan because it just caused a year of stress and inadequate (and inappropriate) treatment. 

As for a normal DAT being an "absolute exclusion for PD", there is a little more to the story than that.  First, so-called "scans without evidence of dopaminergic deficit", (what you and I have) are not always truly normal, because they are interpreted subjectively and humans are wrong sometimes.  (see http://www.prd-journal.com/article/S1353-8020(16)30245-0/abstract).  Second, the concept of "absolute exclusion" is clinical trial lingo.  From the MDS diagnostic criteria, the second sentence reads: "The criteria were designed specifically for use in research, but they also can be used as a general guide to clinical diagnosis of PD consequent to Lewy body pathology."  In clinical trials, researchers typically want a "pure" sample of patients, and DAT scans are an easy way to ensure some sort of homogeneity in the study group.  This is really important for research, but all it means for you is that you will probably not be eligible for some clinical trials. It does not necessarily mean that you don't have what is for practical purposes the same Parkinson's that someone with an abnormal DAT scan has.

Ed

Ed,

Great reply, thank you!  I see you're from Madison, but you referenced your doc as a "he"?  Thought for a moment we might share the same doc. 

 I think I might have mentioned in an earlier post that my MDS didn't want to start me on Levodopa just yet.  She was concerned about the increased "jerkiness" that could occur.  I already have the jerks in my torso and legs when trying to stand still, what's a few more :D  Four weeks til my next apt, so we'll see what happens.

And I think you are spot on in your assessment of the Scan.  I get a lot of information from my buddy in Boston who specializes in DBS.  I'll take his information any day over Dr Google (as NN calls it)

thanks again...

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On ‎26‎/‎3‎/‎2017 at 7:04 AM, ellaangel2 said:

I have read in many places that MSA and PD + will initially show an abnormal DATSCAN, however definitive diagnosis of MSA & Pd+ may take years to confirm after initial diagnosis of Parkinsonism from DATSCAN (as Adam's MDS stated.)

This does not sound like what your MDS is telling you NN..........?

Sounds like he is saying people  that eventually get dx'd with MSA have had "normal" DATSCANS.......

Now, I'm confused........

 

Patients who eventually get diagnosed with MSA typically have abnormal Datscans early in the disease course. Similarly to PD. Datscans CANNOT differentiate between PD and MSA cause they are abnormal in both occasions.  

A normal Datscan -or, even more so, a series of normal Datscans within several years from diagnosis- strongly argue not only against PD but also against MSA.

Thus, the diagnosis MSA is not typically considered for  patients with parkinsonism and normal Datscan (s).

The differential diagnosis of patients with parkinsonism and normal Datscan may include dystonia, essential tremor and several types of secondary parkinsonism: vascular parkinsonism, hydrocephalus,  drug-induced parkinsonism (such as antipsychotics), or toxin-induced parkinsonism (such as manganese poisoning -may be observed during occupational exposure, as in welders, after chronic use of ephedrine-based psychostimulants  or even after  chronic use of bath salts made from ephedrine!!).

 

 

 

 

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The DaT only report the physical structure of your uptake neurons- not their efficiency or quantity.  My MDS said that even if your DaT is positive at diagnosis, so they know it's an uptake issue,  they don't really look to verify if it's also a production based issue, because the treatment is the same- C/L. 

 I have a normal tyrosine production number, a positive DaT and off the charts side effects to C/L but with perfect control and episodic attacks which render me insensible.  My internists is looking into a possible adult onset cases of inborn metabolic disorders that can mimic all, some or most of the "Parkinsonian" umbrella.  If you don't convert tyrosine, into l-dopa and then into dopamine it would look and act just like a positive DaTScan.  And, if this is the case, the treatment isn't a whole lot different.  Even if if they can prove a metabolic disorder, you could still have true PD.

MSA is normally identified through the usual battery of autonomic tests- tilt table, valsalva breathing, QSART sudomotor, sweat test.  The MSA patterns are distinct from PD, Pure Autonomic Failure, Essential Tremor, etc. 

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