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Neurological Symptoms & Difficult Diagnosis

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Old 04-10-2018, 05:09 PM   #1
Doubleup
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Default Neurological Symptoms & Difficult Diagnosis

I am a 46yr old male and really hoping for some help as I am trying to find some clarity with regards to my neurological symptoms and along with an abnormal DaTscan and would appreciate any guidance in my diagnosis. I have been to multiple doctors this past year including 4 neurologists, 2 of which specialize in movement disorders, one of them was from Stanford. All doctors spent a lot of time with me in going over my movement and symptoms and disagree with the findings of my scan and do not diagnose Parkinson’s.

At this point I don’t have motion disorder symptoms in alignment with Parkinson’s, however I do have very high frequency hand tremors in both hands when extending my fingers out in front of me. Sometimes they subside when I am very calm or tired. They are not bad enough to interfere with my daily activities at this time. Only other physical symptoms I have is sometimes upon awakening my thighs and glutes can both be pretty tight and almost burning sore following a very long hard work day almost more from fatigue than muscle soreness if this makes any sense. This subsides typically after rest and/or after getting up and getting moving.

The majority of all my symptoms came to light after stopping Adderall. I was on a low dose 5mg twice daily to treat ADD like symptoms and concentration issues for 2 years back in 2005-2007 and then again late 2015-June 2017. I quit after I began nearly falling asleep in the afternoons a couple hours after my afternoon dose as well as some odd associated headaches during the last couple month on Adderall. I felt like I “ran out of dopamine” for lack of a better term. Once I quit the medicine and had a horrible couple months of PAWS followed by continued symptoms that are still present however somewhat manageable now. After much of my own research I requested the DaTscan specifically against my doctors advise as I read deeper into my symptoms and related them to Parkinson’s secondary symptoms.

Testing Performed:

DatScan 10/17 Abnormal Bilateraly

MRI 12/17 – Normal

PET Scan 2/18 – Normal

Blood – All Normal except slightly elevated Cholesterol and Low Testosterone



Possibly Related Symptoms:

My testosterone levels have dropped below normal in 2 of my last 3 tests.

Some Muscle Tone changes/wasting

Trouble sleeping (awake around 2-3am nightly for about an hour without taking a sleep aid)

Concentration/Cognitive issues. Forgetfulness and foggy thinking

Depression and mild anxiety

Low Motivation

Apathy and Reduced Emotion/Reward

Tiredness/Fatigue

My doctors conclude that bilateral reduction in Parkinson’s is extremely uncommon and that my symptoms are not in alignment with Parkinson’s either. I was told that these tests are visually subjective and it is unknown exactly what size a dopamine system we are supposed to be born with and that mine might just be smaller than normal (like a smaller brain) and that I most likely am still be recovering from the medication (chemical imbalance) and/or have depression. For me and in our discussions, there is also lot of unknown factors relating to Adderall/Amphetamine neurotoxicity and if potentially the meds caused my condition or if the medication just unmasked a preexisting condition? Adderall and Amphetamine withdrawal have a lot of the similar symptoms to Parkinson’s secondary symptoms as well has also been known to affect the results of DaTscan results in some of my research. I am pretty much at a loss of what to do at this point other than just wait it out to see how symptoms progress or change however I feel pretty terrible most of the time and it’s like my life is on hold without really knowing what to expect next and having a treatment plan in place or at least in mind for the future.

My bigger fears are I have been recently getting more worried that this is some type of other neurodegenerative disease like Lewy Body or FTD... As they can affect DAT scan bilaterally... However it seems like I will need to be be a lot worse off than I am now before something like this could be diagnosed... So I am stumped

Any thoughts or advice welcome!
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