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Going for DATscan Tomorrow


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#1 jbirish

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Posted 19 March 2014 - 07:04 AM

I have my DATscan scheduled for tomorrow and I am full of anxiety about it and questions. The first is, why do the doctors diagnosis a patient with PD start all of these meds and then send you for a DATscan 4 months later with the prescription saying to confirm PD? So why have two positive diagnosis then scan? What is really the point of this scan? The only thing I see coming from this is bad news; (1) You have PD, well I knew that already, or (2) the scan was inconclusive and we are not sure, Huh? For four months I have been on Meds and when they work.  I can tell the difference when they stop working, I get worse. Why do I need to spend money that I don't have to take a test that will not benefit me? Should I just cancel it and find a new Dr. who is less tied to this stupid test? Finally, I am not sure I care to hear about how much loss of Dopamine there is. What good will this information do for me? I would really like to hear some people's experiences. Thanks.



#2 Beau's Mom

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Posted 19 March 2014 - 10:29 AM

Hello, jbirish. I completely understand your frustration. Nearly three years after my initial diagnosis, last summer my new MDS sent me for a DAT scan. When I asked why, since I'd been taking Sinemet for three years, it was working and I was progressing in symptoms predictably, he said, "There's a 1% chance that it's something different, Don't you want to make absolutely sure we are treating the right thing?" My answer was no, but, because at the time I didn't have another MDS to work with, I went ahead with it. I am now glad I did. It revealed that, indeed, I have very little dopamine uptake on both sides of the brain. It confirmed my theory that I've had PD much longer than I ever thought, and that it now affects both sides of my body equally. It helped me focus on what truly needed to be done to ensure quality of life as long as possible.

 

Remember that anxiety and stress make your symptoms worse, so do whatever calms you the best, and just keep putting one foot in front of the other. Look at it as just gathering more information. Best wishes to you.

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#3 jbirish

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Posted 24 March 2014 - 07:32 AM

I got the results of the DATscan the same day.  Good Service.  The left side is really no dopamine uptake on the left side and the right side is also depleated.  I was expecting these results so they came as no surprise other than it is clear that I have had PD for years.  It was strange though to go from mild symptons to full symptons in just a few months. 



#4 Beau's Mom

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Posted 24 March 2014 - 12:11 PM

jbirish,

 

Now that you know for sure, your team, which should include a physical therapist, occupational therapist and possibly a social worker or psychologist for counseling in addition to your MDS, can put together a comprehensive treatment plan designed to keep your decline to a minimum as long as possible. I am happy to share this journey with you.

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#5 jbirish

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Posted 25 March 2014 - 06:53 AM

Dianne, thank you for your message.  I have a follow up in June and at that time I will work with my doctor as you suggested for a comprehensive approach, which is always best.  Yesterday was the first time I felt like that PD won.  I worked my normal day but I became very stiff halfway through the day and by the time I got home I was asleep by 8:00 PM from exhaustion.  I felt as if I had ran a marathon.  I am starting to worry how long I can commute to NYC some 60 miles work a full day on job sites and return home in any condition to be a part of my family.  To tell the truth, it scares me.  I am the financial support for my family so I will continue until it was long past reasonable to stop but I often wonder how long that will be.  I am going to be 41 and I have horrible cramps daily in my feet, a progressive tremor on my right that is now lightly in my left side, and I find myself dropping things and tripping all of time. It is nice to write out your own fears as most days you can never share them, becuase either people cannot understand or they understand all too well what the changes mean. 



#6 Daven

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Posted 25 March 2014 - 08:07 AM

JBIrish,  I had my second DaT Scan last week.  The first one came back inconclusive but the second one came back as normal.  I have all of the signs of early Parkinson's. Some of my symptoms are mild enough to question the diagnosis.  Over the last several months, my hands have become very stiff and at times are unusable. I also suffer from overall stiffness and cramping in my legs on a daily basis.  Because of the results from the scan, my doctor is leaning towards dopamine responsive dystonia.  I go for the dopamine challenge test next week.  If I had done the test prior to the scan, I would have ended up with a diagnosis of PD.  Dystonia can be confirmed through genetic testing, which is expensive and insurance companies are reluctant to pay for.  I personally would like to know what ails me and want every stone turned to confirm my diagnosis.  I'm sorry that you have PD  but it sounds like you are planning to fight it with everything you have.

 

Dave



#7 livingwithtau

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Posted 26 March 2014 - 08:18 PM

Since you all have had DATscans could you walk me through what is done and what someone can expect.

#8 Annikin

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Posted 26 March 2014 - 08:37 PM

Painless but long.  I had one last year and if I remember correctly you get a dose of a iodine to protect your thyroid form the contrast, then IV contrast, you wait 3 or four hours for it to absorb (bring something to do and you can eat during the wait), then you lie on a table with your head securely tucked in an apparatus that holds it still while a machine rotates around your head and takes the image. I think that part took 45 minutes. The end. Painless but for some  of us you can get stiff staying still- I remember my butt fell asleep.Nothing to be scared of. 



#9 New normal

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Posted 29 March 2014 - 11:59 PM

My DaT scan was normal, but I am dx'd classic PD by an MDS.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#10 newbob10

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Posted 05 April 2014 - 12:59 PM

New Normal - New Bob here.  Not so new anymore, but I couldn't help it.  I too had a "normal" DATSCAN two years ago, but later had a clinical diagnosis of PD and continue to see progression of symptoms - slow, but progression nonetheless.

 

I don't know about you, but the Normal DATSCAN was initially a relief, and then became another in a series of frustrations in trying to determine what was going on with my body.  If you're feeling that way, know that you're not alone.  Now - two years later, I'm much more comfortable with my day-to-day, and deal with my days as they come.  I'm no longer pretending that there isn't anything going on, take breaks when I need to and have gotten involved in a support group with others that have PD, as well as participating in the Wisconsin Parkinsons Association.  It's been so helpful to learn more about what I'm dealing with, and so helpful to know that 1) I'm not alone, and 2) everyone with PD has different struggles to deal with.  

 

I hope that you're finding good ways to work with your diagnosis, and to go about living the best life you can.

 

Best regards!!  Bob



#11 GreenT

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Posted 14 May 2014 - 05:20 AM

Hi jbirish
Would you be kind enough to share your MDS since I'm looking for second opinion and live around NYC.
Thanks

#12 New normal

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Posted 16 May 2014 - 08:27 PM

NewBob:
I really appreciate your comments. After my diagnosis, I was so cool...like, I can handle all of this...no problem. I was on this forum a lot...chatting away...I tried different things to "cure" PD...started an exercise program...yep, no problems at all..besides, I had a negative DaT scan under my belt, so I figured there was always a chance my symptoms wd disappear once I reduced my stress load....what my kids kept telling me.

It has bn 10 mos, I have had to increase my meds...I now take them at the same time..and I have abt a 5 hr break out...so, NewBob...denial is over...unrealistic expectations are gone...reality is here.

I am tired of talking about it, and concentrate on each day...as you say..and I finally "get it." I think I hv a deeper understanding of the PWP here on the forum...a whole different level...

And yes, it is day to day...feeling grateful I hv bn diagnosed as a senior...and pray for the YOPD....

Thank you so very much for your comments....u remind me I am not alone, but also that the strongest among you still take the time to help others! Good luck to you and your family, my friend.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#13 newbob10

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Posted 19 May 2014 - 09:45 PM

New Normal,
Glad my comments were helpful. Thank you for the well wishes. I hope the best for you and your family as well.

I will be the first to admit that some days are a real struggle. Physically sometimes, but often mentally. I get pretty frustrated when I wake up stiff and shuffle down the hall to take my shower and have to sit a while on the bed gathering steam to put on my socks. It gets old day after day. But I am lucky to have a job that I love, a wife and kids that love me, and support from this forum, and my fellow Parkies in my area.

The other realization that pushes me forward is understanding that there are people dealing with things far more difficult. I can hardly complain. I can reach out though and help others when I can. I know someday the universe will pay me back.

I like your username by the way. Kind of says it all.

Best to you and all
Bob




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