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nosoupforyou

Neg DatScan and DRD

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I had previously posted about seeking a second opinion on a negative DatScan result at my local university teaching hospital here in Arkansas. As a short recap, I'm 33, male, and have dealt with a very slow, gradual increase of neuro symptoms over the past 2 years.

-Started with shoulder/upper back stiffness (hypertonia like after working out), then neck stiffness. Night sweats, multiple sleep disturbances. Urinary urgency. Then stiff down the right arm, slight twitching of right thumb, curling of right toes. Then curling of right hand. Right arm goes from little bit of swing to doing nothing to moving in front of body. Muscles/back stiff now, right side of face slightly stiff, drool pools in front of mouth, dystonia bad in right wrist/hand and right foot now. Some mild speech issues (some slurring/running words together/repeat of beginnings of words). Postural tremor in both hands, resting tremor in right thumb now. Chest muscles stiff. Constipation beginning. Having convergence issues with vision/double ghostly images from lights, especially when driving at night.

-Had negative DatScan. Doctor didn't know what to do. Had positive response to Requip but too many side effects. Went for second opinion at Movement Disorder Specialist. Said most likely Dopa Responsive Dystonia. Second opinion doctor did 20 second physical exam, very dismissive. Dismissed low ceruloplasmin/low copper as unimportant. Prescribed levadopa/carb. 25/100. Took about 1 hour to work, stayed in system about 4 hours before wearing off. 95% of symptoms gone after pill, but stomach side effects were too much to handle at the time. Gradually weened off and now not on anything. 
 

-Ceruloplasmin 11 at last count, Copper below normal (both urine and serum), CK levels below normal, Vitamin D levels below normal. Gastrointestinal exams came back normal. Negative for Wilson's Disease and any "look-alike" diseases. Two MRI's, both negative. Family history of Parkinson's, but all on one side that I know of.

I fully accept the DRD diagnosis if that's what it is, but is there any possible way I could get another set of eyes on my DatScan? Could I PM the image itself to you?. I was only allowed to see it once with one doctor, and with a fleeting glance. I guess I would just like to know if DRD is more likely than Parkinson's at this point, or if I need to start thinking about another MDS. I don't want to look like someone who doctor-hops or is a disability seeker either, because that is not me in any shape or form. If anything, I want the doctor visits to STOP.

Edited by nosoupforyou

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You should be able to get the DAT scan disk from the imaging center and bring to another neurologist for interpretation.

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