My DATscan: Well, its for real... - Cure Parkinson's

Cure Parkinson's

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My DATscan

bassofspades profile image
53 Replies

Well, its for real.

"Diminished uptake involving bilateral putamen with slight asymmetrically diminished activity involving the left head of the caudate. Findings are characteristic of parkinsonian syndromes."

Im surprised I feel as good as I do. This looks pretty bad.

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bassofspades profile image
bassofspades
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53 Replies
procaffeinator profile image
procaffeinator

May I ask how long you’ve had or known you’ve had Parkinson’s? May I also ask your age and how much progression it says in the datscan? Are you taking Thiamine?

bassofspades profile image
bassofspades in reply to procaffeinator

Im age 50, diagnosed 7 years ago as parkinsonism. Yes I take Thiamne. It does not say anything about percentages or progression on the report. All it says is what I put in quotes, nothing else except the technique used.

bassofspades profile image
bassofspades

feel free to ask me anything you want!

procaffeinator profile image
procaffeinator

I’m so glad you feel great. It might be stupid of me to ask, did you ever get a DatScan before to compare progression? I know I haven’t been here in a really long time but I still get notifications. I’m doing good by the way. Have you hear of Dr. Constantine’s health, is he back?

bassofspades profile image
bassofspades in reply to procaffeinator

Hi my good friend ! Your questions aren't stupid!! I don't have a previous scan. I cant say that I feel great, but by the looks of the scan I'm surprised that I don't feel worse than I do! I haven't been in touch with Dr C and have not heard any updates about him. Glad you're doing good!

procaffeinator profile image
procaffeinator in reply to bassofspades

Hi!!! I hope you always feel good. I was looking at a documentary called Weed the People and contacted Aunt Zelda (if you watch the documentary on Netflix you’ll know who I’m referring to) and they replied:

“Thank you for reaching out to Aunt Zelda's, I am sorry to hear of your diagnosis and hope we can help. In general, most patients we work with use two infused oils, one THC-rich and one CBD-rich, in order to start with low doses of both cannabinoids and increase until achieving effective levels. There are not specific products for specific conditions, and most people need to find the right blend of THC and CBD for their situation. The doses required for Parkinson's are usually less than cancer and you may need 1-50mg THC and 10-200mg CBD per day to potentially address symptoms. Please let me know if you have any further questions.”

My reply:

“Thank you Justin for replying so quickly. I’m curious to know if once the correct dosage treatment is successful, would I need to continue the THC and CBD for the rest of my life? The 10-200CBD a day, how is it spread out throughout the day? I have three children and wonder how my physical and and mental alertness would be affected with he treatment. Are there specific THC and CBD you can direct me to on auntzeldas website?

Thank you for your time.”

His final reply:

“The list of THC and CBD products are on AuntZeldas.org, either the Nighttime/Regular Strength CBD at 10mg/mL or Extra Strength THC and CBD oils at 30mg/mL are suitable products. The doses are usually split up throughout the day. Instructions for how to achieve any specific target doses with any lab-tested product are found at Question 6 of our FAQ. Most people do need to stay on cannabinoids for life, although by using CBD during the day and THC minimally combined with the CBD or alone at night psychoactivity can be minimized.

For more specific advice, we work with a physician and nurse who provide consultations over phone or Skype. They can advise how much THC and CBD should be used per day as an initial target dose, and answer other questions related to the treatment. If interested, you can sign up using the instructions on the bottom of AuntZeldas.org. Please let me know if you have any further questions.”

procaffeinator profile image
procaffeinator in reply to procaffeinator

My point is that I am left wondering how effective and if using THC & CBD oil is a better option than the one Dr. Constantine recommended? He recommended Thiamin 500 once daily along with my Carbidopa. Does anyone or do you know how THC and Cbd has helped people with Parkinson’s?

Gioc profile image
Gioc in reply to procaffeinator

Hi procaffeinator.In my experience of thiamine after four years of continuous use I have no side effects that I am aware of. This could make a difference.

procaffeinator profile image
procaffeinator in reply to Gioc

That’s great news!! I am so glad to know that. Tomorrow I’ll be 41 and I feel great taking 500mg of Thiamine and three 25 mg of Carbidopa a throughout the day. My kids drive me nuts and make me feel like I’m 87. Im kidding. No I’m not. Yes im kidding, mostly.

Juliegrace profile image
Juliegrace in reply to procaffeinator

Do you mean 25/100 carbidopa/levodopa?

procaffeinator profile image
procaffeinator in reply to Juliegrace

Yes

bassofspades profile image
bassofspades in reply to procaffeinator

I tried cbd oil. It was the kind that was supposed to have no thc in it. I could lose my job if i test positive for thc. The clerk at the store gave me instructions, he was very knowledgeable. I took the first dose and it made me feel sky high. Still had all my symptoms but i just wanted to vegetate on the couch, watch cartoons and eat Doritos. No more for me!

procaffeinator profile image
procaffeinator in reply to bassofspades

I figured anyone taking THC or cbd would not be able function properly and would get fired as well. Thank you. By the way do you like Ace of Base? Every time I see your bass of spades name I remember the music group. 😐

bassofspades profile image
bassofspades in reply to procaffeinator

The name comes from me being a bass guitar player, and my nickname used to be Ace. So i put together a group and called it bass of spades. This was just a few years before ace of base had their hit, i saw the sign! I was known as Ace on bass, not Ace OF Base! Lol! Notice they spell it base, not bass. Maybe they smoke freebase cocaine? That'll jar their datscan!!

procaffeinator profile image
procaffeinator in reply to bassofspades

THats hilarious and yes I know the difference in their and your spelling. I play some guitar and some bass too.

weekapaw profile image
weekapaw in reply to procaffeinator

That's ridiculous. If you use a Sativa, it will keep you focused and alert. You people need some education.

bassofspades profile image
bassofspades in reply to weekapaw

Dushkow the clerk seemed to be very knowledgeable, I don't know squat about marijuana and im not going to mess with it again..... till I retire!

bassofspades profile image
bassofspades in reply to procaffeinator

Only 500 mg thiamine? He started me on 4000!

procaffeinator profile image
procaffeinator in reply to bassofspades

I am taking 500 only. Now that he’s on absence, I don’t know if I should increase my dose. I have no one to re-evaluate me with his Thiamine approach. I feel great with the medication and Thiamine he recommended, but i am unsure if increasing to another 500mg should be increased in the late afternoon or take 1000 in the early AM? Any suggestions?

bassofspades profile image
bassofspades in reply to procaffeinator

Unless you're having a problem with it, don't change!

Gioc profile image
Gioc in reply to procaffeinator

healthunlocked.com/parkinso...

Tryguy profile image
Tryguy

Hey Bass, did the Hinz protocol help only in the early stages ?

bassofspades profile image
bassofspades in reply to Tryguy

Im not on the hinz protocol anymore, been experimenting with typical Parkinson's drugs like Carbidoopa Levadopa and selegiline. Frankly, i think I was doing better on the hinz protocol. Drugs are cheaper but I guess you get what you pay for . I really would like a better doctor!

Tryguy profile image
Tryguy in reply to bassofspades

Yes that is where I’m at too - 5 mg of selegiline per day, a little over a gram a day of Mucuna w carbidopa. What prompted you to get the DAT scan?

bassofspades profile image
bassofspades in reply to Tryguy

Ive been dying to get a datscan since day 1. My neurologist finally got a nurse practitioner with some compassion and she wrote me the referral! The neurologist just wanted to repeat brain mri's that are always negative, probably because he owns the scanner and makes money from them.

WinnieThePoo profile image
WinnieThePoo

Less advanced than mine. At least they're pretty colours. I had my 3rd today. Not sure I can get to see the results

bassofspades profile image
bassofspades in reply to WinnieThePoo

Yes the colors are pretty! Good luck Wiinie!! How far apart were your scans?

WinnieThePoo profile image
WinnieThePoo in reply to bassofspades

May 2018 (diagnosis) Jan 2019 (trial screening) today July 2019 (24 week trial)

bassofspades profile image
bassofspades in reply to WinnieThePoo

Oh, what are you trialing? Hows it going??

WinnieThePoo profile image
WinnieThePoo in reply to bassofspades

I'm on the SPARK trial. Seems to be going well

nldr18 profile image
nldr18 in reply to WinnieThePoo

Could you please explain what the SPARK trial is about. Thx.

Natasha

in reply to nldr18

michaeljfox.org/news/clinic...

WinnieThePoo profile image
WinnieThePoo in reply to bassofspades

I'm claustrophobic and had to have an MRI as well today. Large glass of red wine needed

blazingsaddles profile image
blazingsaddles in reply to WinnieThePoo

Hi, Winnie. I was terrified of an mri too and said I would never had one (eating words and red wine go well). I don't know if its available in your area...I'm in northern Colorado and my neurologist found an open mri. Still a pain in the patoot, but not nearly as bad as a closed mri. Best to ya!

Juliegrace profile image
Juliegrace in reply to WinnieThePoo

Some trials will provide copies of testing if requested.

WinnieThePoo profile image
WinnieThePoo in reply to Juliegrace

Yes. Work in progress. I asked to see the first trial scan and my research coordinator agreed to send me colour prints but has been unable to obtain them. Always tomorrow. I noticed that the anonymous box was ticked on today's prescription

Gioc profile image
Gioc

hi Basso, happy to see you in good health and in person, even if I would have preferred a picture of you on the frequency of light ...😂

bassofspades profile image
bassofspades in reply to Gioc

I love that you call me basso!

LAJ12345 profile image
LAJ12345

Stay positive! That’s 90% of the battle and why you have been so good.

bassofspades profile image
bassofspades in reply to LAJ12345

Thanks, it ain't easy!

Kia17 profile image
Kia17

Hi Bass

At least you know where you are standing.You should have done even earlier. I have seen dozens of DatScan for different people in the internet. As per my research on DatScan, luckily your PD is in very early stages. I am sure you can keep it as it is even improve it for years with lifestyle changes.

Best wishes

Kia

bassofspades profile image
bassofspades in reply to Kia17

Thanks my dear friend ! I wish I had the scan years ago too, but i had a long period of "doctor issues "! Lol

Marcomando profile image
Marcomando

Yep, looks like mine did. My consultant sent me for a DaT scan to confirm his diagnosis at the start of it (dx Jan 2016 age 54). I’d had definite symptoms for a year (initially foot drop, screwing up my toes, minor tremor) and then looking back possible symptoms for longer. Like you I’m a musician and I’d noticed my hands weren’t working like they used to. Thought I must be out of practice and bought one of those springy hand exercisers -hah!

And like you (I hope?) I feel pretty good still. 100/25 Levodopa 3 (sometimes 4) time’s a day. 1mg Rasagiline pd. And 4g of Thiamine - though I’m not certain it helps but figure it’s worth a try. Been taking the Thiamine for over a year now. Perhaps I’d be worse now if I hadn’t been taking it? There in lies the conundrum - we never know how we’d be if we’d followed a different course...

Chin up and soldier on!

Marc

bassofspades profile image
bassofspades in reply to Marcomando

Thanks my friend!!!

mmnucmed01 profile image
mmnucmed01

The severity of the deficiencies as described on the DAT scan Does not correlate or is reflected in how you feel or the extent of your ailments.

Your scan would be described as a moderate dopaminergic Degenerative deficit. A severely abnormal scan which showed barely any activity in either putamen or caudate nuclei.

The DAT scan is an excellent test, but unfortunately it does not reflect the overall dopamine system in the brain

bassofspades profile image
bassofspades in reply to mmnucmed01

Thank you, do you mean in general?

NRyan profile image
NRyan

I see plenty rays of light! Hope springs eternal. There are so many things coming down the pipe. Focus on where you want to go....and ride like hell. Science will have your back and eventually catch up to you.

bassofspades profile image
bassofspades in reply to NRyan

Your positive vibes are stellar in the literal sense of the word !!!

NRyan profile image
NRyan in reply to bassofspades

youtube.com/watch?feature=y...

Check this out. I love this video. Listen carefully. Also, I'll reach out with some other things to consider.

SELFMeder profile image
SELFMeder

All

I’ve been tracking and mimicking for over two and a half years the early, small sample NAC trials , both of which have been predictive positive (the latest one at the p < .001 level) in reducing classic PD symptoms. Been taking 2400 mg per day. With C/L 25/100 3xDay.

Google NAC for more information.

I also fast walk, resistance train and row every other day, along with 2 x mo Feldencrais and deep tissue massage sessions.

Plus daily supplements (Mag Glycinate, B, D, CoQ10, Skull Cap, anxiety med, Advil’s, a slice of Ambien and 50 mg of gummy Melatonin before bedtime for sleep, and OTC constipation meds).

Haven’t found any shortcuts; but my cluster of early PD symptoms have been greatly reduced and I feel near normal 80-90% of the time. I am 75 and now in to 5+ years of life with PD.

Hope this helps.

gaga1958 profile image
gaga1958 in reply to SELFMeder

hi

how did you arrive at taking 2400mg/day of NAC? the studies I saw were at 500-600mg.

did I misread them? my integrative dr has me taking 600mg/day.

ths chris

bassofspades profile image
bassofspades in reply to SELFMeder

I was taking 3600mg nac a day when I was on the hinz amino acid protocol. I recently started slowly building up my nac again with 1200 mg a day. Glad you're doing well!!!

SELFMeder profile image
SELFMeder

My naturopathic doctor at Rothfeld Apothecary in Waltham, Massachusetts made the Rx after learning about the initial NAC study results. Google Dr Rothfeld for more info.

Good luck!

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