DaT scan results and Young diagnosis

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lunablanco
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 8/24/2011 7:57 AM (GMT -7)   
My husband is 37 and was just diagnosed as having Parkinson's by a Neuro in July.  He was referred to a Movement Disorder Specialist who also confirmed the diagnosis, but did a DaT scan to make sure.  The scan ended up being normal and my husband is now been prescribed Sinemet to see if he responds.  My husband has all the symptoms of Parkinson's so I am confused; tremors in his left hand, cramping in his left arm, no swing, neck and shoulder stiffness, voice change, hearing loss, and is starting to lose his balance.  He is quiet (which is very unlike him) and is not as responsive to the kids.  
 
Has anybody had a normal DaT scan, but still ended up with a Parkinson's diagnosis?  If not Parkinson's, what was the final diagnosis?  What other disease/disorder could so closely resemble Parkinson's, but produce a normal DaT scan result.  I am scared as to what else it could be.  My husband will begin the Sinemet in a fewdays.
 
On another note, my husband works offshore and is exposed to all kinds of toxins on a daily basis and also delivered supplies to the clean up crews right in the midst of the oil spill last year and shortly after his symptoms started appearing.  The docs do not think to seem this is important.  
 
Any help or information would be greatly appreciated.   
 
 

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1476
   Posted 8/24/2011 9:31 AM (GMT -7)   
lunablanco
I do not know anything about the DaT scan. I would question the sinemet. Is the sinemet going to be a confirmation of PD or the treatment of the disease? When I was diagnosed with PD by a general neuro he prescribed sinemet. Did some research and found the side effects and long term use effects. Also read about Azilect. It has been shown to slow the progression of the disease. Went to a movement disorder spec. He agreed that sinemet is not the drug to start with. He agreed to try Azilect. After three years I am doing fine. I take 1mg Azilect and 2mg Artane to help with the tremor. Azilect is expensive.....full price about $950 for 90 days.

Just my experience
Dan
67 YO

lunablanco
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 8/24/2011 11:00 AM (GMT -7)   
polishdan
 
Thanks for the info.  Right now, the sinemet is to confirm the diagnosis by seeing if it improves his symptoms.  I am not sure if the doc will continue the meds if he responds, as he initially said he didn't think he needed meds at this point in the disease.  I will definitely look into the Artane.  We are very worried about side effects since my husband works on a boat.  The DaT scan was just approved by the FDA in Jan 2011 for use here in the states.  It measures the amount of dopamine in the brain, but I'm unsure how accurate it is in the early, early stages.
 
Thanks again!

MeAndPD
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/31/2011 9:51 PM (GMT -7)   
I had DaTScan as part of my participation in the Michael J Fox Foundation PPMI study (sign up http://www.michaeljfox.org/living_PPMI_findsite.cfm )

My result came back "low" so I assume this confirms my PD - which incidently is PIGD (Parkinson's with no tremor - but gait and balance issues)

Good luck, Brian

ps: the PPMI study is still looking for volunteer participants - great way to get free DaTscan and help the cause

Mkwpd
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/12/2011 4:19 PM (GMT -7)   


I am newly diagnosed with PD and am enrolled in a clinical trial that uses a Dat scan. Were there any serious side effects from the drug used in the scan? My husband does not want me in this bio marker trial, he feels the tests are too invasive. I am 54 with a strong family history and would like to be part of finding a cure. Thanks!

lunablanco
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 9/13/2011 1:09 PM (GMT -7)   
Mkwpd,

My husband didn't have any side effects from the drug used in the scan...no headache, nausea, etc. It was a pretty normal day overall. The worst part for him was drinking the iodine stuff that protects your thyroid the morning of the procedure, because it tasted bad. Hope this info helps you to make your decision. Take Care.

Mkwpd
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/13/2011 3:26 PM (GMT -7)   
Thank you! I just need reassurance on the PPMI study...am starting on the 20th, with the scan on the 22nd. Then will have scheduled lumbar punctures for 4 years.

Mkwpd
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/14/2011 11:16 PM (GMT -7)   
For meAndPd, and others

Have you done the spinal taps? Was it okay as far as the experience? I am an O.R. Nurse who has assisted in many spinals...but am hoping this is not such a big deal as a true lumbar puncture.

Looking forward to some responses:(

golden100
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/8/2012 5:27 AM (GMT -7)   
Hi

I had a dat scan done early 2010 wich came out normal. There was some different left/right side on uptake, but i have a very posetive response to l-dopa challenge test. It has progressed very slowly and i was given a diagnose parkinsons late 2011. (My age is 36).

I myself do not think i have normal parkinsons. I belive must be in a group they call SWEDDS.

How are things going with your husband now? Did he respond to the sinemet trail?
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