No one can seem to tell me if I should be on or off my Carbidopa/Levodopa when I do my DaTSCAN later this month. Even my Neurologist can't explain or give a recommendation, he's not sure and states he is to busy to research the answer to this.
Has anyone out there had any experience with this, and can yo share please?
My advice is skip the datscan no good reason to have it.
I was told that too because of false positives. Some of us do not have the classic symptoms where movement disorder doctors can effectively diagnose. Sometimes it seems the only diagnosis is to try the meds. There are so many variables and new things are being learned which is good. Hopefully we will have better testing soon. We all are doing the best we can with what works best for us.
I have had a Dat scan and it is exactly as stated on the UW article. Do NOT stop your Sinemet!
First, get a new doctor.
Second, why are just now taking the DatScan if you are on PD drugs. I would want to know for sure, one way or the other, before I started taking drugs.
Third, the drugs should not affect the test.
I COMPLETELY disagree with Baily, Texas. The DatScan is the definitive test to determine if one in fact has Parkinson's or some other disorder.
Last, i'll get on my soapbox for a minute. I am almost in my 5th year since diagnosis. i am still not on any drugs. i work out at the gym every day, and strenuous walk 3 miles of very hilly terrain in an hour or less at least 3 times a week and on other days a mile. There is research that proves this type of walking is extremely beneficial. If you're really interest, look up John pepper from S. Africa on google. Buy his book and read it!
To date my symptoms are a tremor in my left hand and vivid dreams. !
Good luck with your test
Phillip, Montgomery AL
I was diagnosed in 2008. I did not start medications until 2010. I now take four (4) 25/100 Carbidopa/Levodopa four (4) times daily) for a total of 16 per day. I have had very good results from the use of this drug. My Neurologist just thinks it would be a good time to do this test now.
Poison
Did u have a dac scan
Hi you are very lucky that you can do 3 mile walks. I would love to be able to but my legs prevent me. My legs are by main symptom I use to walk miles.
Good luck to you - it's great you've be able to keep of drugs, long may it last. I have just bought John's book.
Budsey
Ask your neurologist what difference the DaTscan will make to your clinical care. According to the DaTscan prescribing insert, this radioactive tracer delivers about the same radiation dose to your substantia nigra as twenty-one (21!) CAT scans of your brain [1]. The clinical safety of that dose of radiation has not been established for the already injured dopaminergic neurons in a Parkinson patient's basal ganglia. Further, the image quality for SPECT scans is quite blurry.
If you have been diagnosed with Parkinson disease by a movement disorder specialist and your condition responds to carbidopa-levodopa, the DaTscan is of questionable diagnostic value. In the controlled studies, DaTscan results were compared against the gold standard for diagnosis, which is a thorough examination by a movement disorders specialist, augmented (if necessary) by a therapeutic trial of Levodopa (Sinemet). I have Parkinson's disease and I completed a year of Nuclear Medicine fellowship in addition to Internal Medicine, plus I am a Caltech-trained electrical engineer and I have been published in this area. I would not submit to a DaTscan. If there were a solid reason to need a scan, you can get a PET scan of the brain for the same dose of radiation which has much better spatial and temporal resolution. I am not a neurologist, but I would ask for a second opinion if my neurologist wanted a DaTscan. And I would inquire whether he is part-owner of the local DaTscan machine!
1: Keller DL. Nonneurologists and the Dopamine Transporter Scan. JAMA Intern Med. 2015 Aug;175(8):1418. doi: 10.1001/jamainternmed.2015.2497. PubMed PMID: 26236969.
ncbi.nlm.nih.gov/pubmed/262...
I refused DatScan for the same reason of high radiation. Fairly good success with Mannitol and mucuna pruriens powders. No meds yet. Resist being a human lab rat to the pharmacy scam.
Sorry to inform you are taking meds just under a different form or name.
Mannitol is a big pharma drug.
Mannitol is Natural sweeter in powder form commonly found on gum, not in IV format as in DRUG format. Big difference in low dose powder format.
I agree. Can u tell me how much to take of mancuna and mann. And where do i buy
Mannitol: 2 half TBSP daily. From Nu Sci thru HerbstoreUSA.com, Walnut, CA. Mucuna pruriens: Star west Botanicals, Sacramento, CA, 1/2 tsp in morning. Dosage different for each person. Start small. Most doctors of little help. Been on it 6 weeks. Still adjusting dosage. Marked improvement. No constipation. Good luck, Tom in CA
I ck.out this site...no mucuna
If taking a dopamine drug is the goal why not a tested, measured approved drug? Same difference. Mannitol injected has been preliminarily tested, not oral, on flies and mice. Make your decision.
100mg in capsules. ...could i start with them?
Macuna 100mg
As shown on the powder bag purchased it shows Mucuna pruriens is 750 mg per 1/4 teaspoon and Mannitol is 2.5 grams per teaspoon. You'll have to get a jeweler scale to better dosage read. Tablets work too. Just check out the dosage. Good luck, Tom
I ck.herbstoreusa but they have no mucna
You have the two reversed. Mucuna pruriens is Starwest Botanicals and HerbstoreUSA.com is Mannitol.
Davidlouiskeller
Can you please read my post to parkie-bear from yesterday, I would really appreciate your opinion
Sorry, I cannot find it, I am new to this forum. Can you supply a link?
davidlouiskeller
These are my posts
Chicafromchitown
Thank you, Does any one know why Neuros get mad when you mention the word "Supplements" They don't believe on it, I've changed two Neuros they don't listen to my suggestions, does any body lives in Chicago that wants to share her/his good Neuro pleaseeeee!!! let me know, I can't take it anymore.
Chicafromchitown
Park_Bear
Thank you for the websites lots of info. I was reading your post from last year, about withdrawals from Dopamine Angonist, I've taken Requip XL 12mg for almost 10/11 years now, I recently saw a new neuro, who doubts that I have PD??? he said that he is 50/50% not sure weather it is or not. He wants me to go for a PET MRI?? (does anybody knows what it is) he mentioned something about how much Dopamine I have. I read and I read about my symptoms which are a left side tremor of which it was controlled with Requip so neuro said it is imposible to have PD for almost 11 yrs and not look like I do minimal symptoms. anticholgunate (don't know right spelling) up to a few months ago when I stop taken Requip cold turkey, but ever since I haven't seen the light, I get spells of crying, I can barley walk it feels like my legs are give in, I fracture my right ankle in May 2016 but it hasn't heal right so now I don't know how to put the puzzle back, a few years ago I tested positive for Sjlogner's syndrome, I am totally confused. Please help, any comments, opinions, advice. Thank you.
Chicafromchitown
Thank You so much for responding to my post right away, does a PD patient has to be on a Dopamine Agonist? I was on taking the max on Requip XL 12mg 2xday so the Neuro lowered to 4mg 1xday but I still have lot of left of 12mg so right now I am only on Trihexyphenidyl 2mg 3x day and Lorazepan 0.5 mg my neuro asked why wasn't I on Cardoba/levodopa I told him I wanted to hold on to it, he said I don't understand why patients want to hold on to they are 70 yrs to start no, he said they should start now when you can enjoy life not when you are 70 yrs old. Please is there out there someone with similar situation as mine please respond.
I am having one soon. I have received clear written instructions, backed up by a telephone conversation, to STOP all Parkinson's drugs (levodopa etc) at least 24 hours before the dat scan. I do not know whether you are having exactly the same procedure, but I think it's important that you get the answer from the people doing your scan.
Mine was part of a research study at OHSU.
I had a datscan and I was on my med's no one said not to be but to be sure call the place thst is doing the scan and ask them
Datscan for John Pepper
crazy meds
Is it necessary to take meds during the night?
Meds Experiment
