Ive had an MRI now im going for a Dat Scan. I know how they do it but WHY!!!!!
NO ONE is explaining anything to me..been dx over a yr ago seen a consultant once who told me i need these scans.... Ive never had my meds reviewed my own gp says thats up to consultant. The parkinsons nurse was nice and advised i change my consultant... Still waiting.... If it wasnt for other parkies id go mad ...
I have been diagnosed with pd 12years I had a dat scan a few yrs ago. It was to check where the blood flows in the brain. I had to drink dilue iodine . The tests didnt hurt .My husband came with me and it took a few hours If you need to know any thing else please get in touch with me
Thanks xx
I'd be searching for a new Neurologist if it was me! I respect doctors but only if they respect me! You can always research things on the Internet too! I can't have one because I have had the DBS! So I can not have an MRI!
Blessings,
Carol
Thanks. I will....
based on Mtchdee's entry ' I went on line and found an article from NATIONAL PARKINSON Assoc or FOUNDATION. which went into the entire procedure for a Do Tscan. It basically indicated that a Pet Scan or a Do Tscan is done to determine if the patient has PD or some other problem like essential tremors etc.
hope this helps Gettome
I made an error. It is spelled "Da TSCAN or DATSCAN
Thanks lets hope i can move on with my treatment once scan done .
hi i was diagnoised 5yrs ago this mth by a neurologist by the usual tests no arm swing ,dragging right leg, not able to stir a pot ,,butter bread .small hand writing.he said he was 99 percent sure that i had pd, i had a dat scan in the mths that followed and it proved that i indeed had parkinsons .i had an injection of nuclear medacine into my arm i was then allowed out ot the hospital for 3 hrs and was told not to be near very young kids or pregnant women as i wud be radio active . it didnt take long for the scan worst part was being in the enclosed space of the scanner tunnel but they keep talking to u the whole way tru , they gave me iodine to take home with me to drink for a couple of days to clear it tru ur system , The dat scan is the only scan that shows the area of the brain that holds dopamine called the substancia nigra [ not sure if thats how its spelt ] when the loss of dopamine is down to 20percent the symptoms of pd apear, so then we need meds to top it back up but this is all trial and error and what suits some dosnt others havent met anyone in last 5 yrs that take same as me its not a one size fits all illness . i started one a day now im on a mix of 4 different meds and even though i take them every 2 and half hrs i still get off times in the day up to 3times some days .im due back to my neurologist next tuesday ,mitchdee i hope this is a help to u as in the early days i was the one asking the questions i dont hav all the answers but if i share my experience and it helps even one person then im happy ,as i say u have to have this illness to know how it feels thats why us parkies stick together lol x
Thanks i feel much better about this scan. At least i will know 100% i have pd. The one thing i do know are people with pd are an amazing bunch and i have some new friends...
hi mitchdee. i know it sounds strange and funny. but after going through it all.. being almost locked away. my strengh in my left side is getting less. the tremor wont get better and sometimes i think about how to manage it all. my Business my kids my wife ( she's in the final stadium with multiple sklerosis). i learnd one thing ... i decide much more whats good for me and whats not... and i simply dont do the second ones anymore. you'll find out that medication is just a help to get better. it s really getting great when you do things..... fun things and open much more to whats happening around you. butterflies.. simple details like the grass is really green...aso my medication is now. citalopram 40... trittico 150/ 2 zimes... ergenyl 500 /2 time... madopar 62.5 / 3 times a day and sifrol 3.15. keep the spirit and dont hese
hi mitchdee. i know it sounds strange and funny. but after going through it all.. being almost locked away. my strengh in my left side is getting less. the tremor wont get better and sometimes i think about how to manage it all. my Business my kids my wife ( she's in the final stadium with multiple sklerosis). i learnd one thing ... i decide much more whats good for me and whats not... and i simply dont do the second ones anymore. you'll find out that medication is just a help to get better. it s really getting great when you do things..... fun things and open much more to whats happening around you. butterflies.. simple details like the grass is really green...aso my medication is now. citalopram 40... trittico 150/ 2 zimes... ergenyl 500 /2 time... madopar 62.5 / 3 times a day and sifrol 3.15. keep the spirit and dont hese
Its my left side too. But i wont give up. My family wouldn let me....the only meds im on is mirapixen. Plus blood pressure stuff. .
Happy Easter everyone.
I was dxd over 8 yrs ago by a geriatician who majors in PD. It was almost by accident as I pestered my GP about gradually losing use of my left side for long that he asked if I'd like to join a nerve function trial at my local hospital. They tested nerves in both arms & legs with electric currents & very quickly I was told that my nerves were functioning OK. Then I met my consultant who did a few visual & manual tests & told me the 'bad news' that I had PD.
More sophisticated tests such as DAT & MRI were only conducted fairly recently as part of a stem cell transplant clinical trial. The main point I am making here is the importance/significance of the way in which information about PD is initaily given & subsequently managed. All the professionals by whom I have had the good fortune to be treated have put ME, the patient, at the centre of activity. They have given me time, answered my (many) questions, helped me through phases of different alternative treatments & always put the focus on me. In the NHS with stretched resources it is not always possible to just move from one professional to another & maybe not that desirable. I think i may be the patient from Hell with my questions etc but you really must ask (& ask & ask...) & if you you are are nervous please take along someone to support you. It's in everyone's interest to get things right but sometimes professionals don't know they haven't been understood - they have to be told....after all they are only human.
Hi ,
Dont worry i had one a year after dx it showes up the part of your nut that has stoped producing dopamine, are you going to the Royal or Southern G , you are given some liquide to take then go back 3 -4 hrs later and the scan lasts about 30 mins
if you need to talk about it give me a call on 07710270191
Al
The southern general. Mum and dad are coming with me. Wish they werentits a long day for them to sit around. Mum isnt fit to go round shops . She wont let me go to pub either lol. Thanks for offering to talk.
Dat scan isn't used widely in U.S. yet. I'm sure it will. Once they buy the equipment, they need to use it to pay for it 
Yes, knowing for sure and ruling out more awful stuff is good. Looking back I think I've had 10 not bad years with PD. It seems bad some days, what with other stuff.
Hi Mitchdee, a few points from your post and the replies....
I am sure you understand the reason for and the mechanics of a DAT scan by now but have you visited the Parkinson's UK website for information? They have some excellent publications for people who are recently diagnosed. I have included a link here if you want to explore.
parkinsons.org.uk/advice/ne...
You should be at the centre of the treatment for your condition and you must not be afraid to ask questions and get the information you need from the consultant. The idea is that you make informed decisions about your treatment and that can only be done if you have the information. In my experience, nurses go out of their way to answer questions that you have and to stay very professional about their comments on other clinicians. If your PD nurse suggests a change of consultant it might be for a very good reason. Different consultants suit different patients. You need to feel part of the team and if you don't, perhaps a change of team is in order.
Have a look at this You Tube clip youtube.com/watch?v=LnDWt10...
Sometimes it takes a while for people who are newly diagnosed to find a support group that they are comfortable with. Often the groups are full of people who are older or more advanced than yourself. However, my husband and I (I sound like the queen now) only really started to move forward once we had met a group of like minded younger onset people who could laugh at themselves. We felt human again. Again, the Parkinson's UK website might be able to help you find a supportive group.
Keep chatting and posting,
Sue
Hi Sue,
Many thanks for sharing this wonderful video. if only more physicians felt this way. It is so very very difficult to find a good neurologist. I have been through four and "interviewed" twenty. I keep looking for someone who would engage in Participatory medicine. Good luck everyone!
Hello Sue,
I would like to thank you for your previous post and the video. It sounds like the UK is light years ahead of the US in healthcare and particularly PD. I was young onset, noted symptoms to my Internist for about 8 yrs. with no help.
I finally took it into my own hands and saw a Neruologist. I walked out of his office after waiting for three hours, him spending five minutes with me and giving me what I knew was a bogus diagnosis. I then made a second appointment with another neuro. Before I saw him my tremors were terrible and I had several falls where I was unable to get myself up, visual hallucinations, etc. The second neuro did diagnose me, almost like in the video, wrote me a script for Azilect, told me I should feel better in a few days.
The positive thing he did do was have me talk with another PWP who was in the office at the time and taking Azilect.
I have been searching for a new doctor, but it is very difficult the way insurance is in the US. It is good to know there are doctors out there who see they need to come down from their ivory towers and give patients a part in their healthcare. I am an RN (no longer able to work) and and was married to a physician for 15 yrs. I have first hand knowledge of how pompous Drs. can be! I dread seeing my doctors because I do want to participate in the decisions regarding my health, but it is an uphill battle!
I am planing a longer post but I had to respond to this. I have atypical presentation of PD (which is typical), with features of dystonia and ataxias, tourette's (not the cursing kind, darn it), and fro a while they speculated MSA and other things. Five months they ordered a Datscan because I did not rtespond immediately to the Sinemet/Azilect/Mirapex. They found "subclinical" indications and decided to wait a year and do it again.
Be very very careful with expectations. They "say" that scan is definitive but look close and you find it is not, at early stages. It's too new and they have zero baselines (as of fall 2012) for normal anything.
And I echo what others have said here. Find a neuro who will listen and ask lots of questions., and answers all of yours. I have had nothing but mediocre to terrible experiences. I live upstate NY and firsts tried the "best", Mt. Sinai in NYC. Nice enough doctor Dr. C______, but a total of 90 mins together in seven months, never wanted to listen, had an agenda for each meeting and hurried me out for next patient. Never monitored my meds, didn't return calls until Friday evening and both times it was with news that made for a very bad weekend, with no one to call back to discuss.
See the AARP article (google) on how critical it is that doctors give you their email address and rules of engagement for using it. Better still insist that the doctor help you keep a diary, and that they listen to monthly changes and the results of tests and phys therapy etc that occurs beyond their clinic services. Most of the better movement disorder clinics are simply pill mills who see patients 3 times a year at most. Mt. Sinai, NYU Langone (even worse), Albany Med (indescribably hostile and un-curious and inept). Find a good, solid neuro near you, NOT "topnotch" and build a plan with her and your primary caregiver, so you can be listened to and be answered, so that ALL aspects of your experience and their plan are understood.
The pomposity you mention Susie01 is tolerable in most specialties, but my experience after 14 months is the "better" neuros are uniquely bad. They spend half the week doing research, don't like patients because it takes time away form their "real" work, and take it out on us by being distant and directorial. Their incentives are wrong. They keep fishing for things related to their research. C________ studies Tourettes so we spent time on that. G______ at NYU is generalized in her research but that kept looking for safe, normative ideas (don't get me started on CYA issues). A side trip to an astonishingly bad one, Dr. H_____ at NYU, saw me twice in order to talk me into ECT for PD (shock therapy). I was very leery. When I looked up the name and study it showed on first page of search that the author had refuted his own work, saying 5 of 16 PD patients in study had permanent cognitive damage after one "treatment", the rest were reported as "better" only by their caregivers (!) since the study's patients were all over 70. Better meant they could manage the patient more effectively and was less trouble and grief for the family. Ugh.
When I told him I wouldn't do his ECT study he dropped me, in less than a week. (is that allowed?).
Then Albany was the last straw. The point is: plan your overall treatment. Have a good-enough neuro, a good primary care, and sort it out. The bad ones look at the milestones (scan results, med good/bad?, quick check on deteriorating symptoms) then NEXT!
All I say should be filtered through this: I am not the ideal patient. Besides being a program manager of very complex systems for clients like Yale, i was also the editor of a critical thinking site. I read the research, look up my doctors, hunt down their work. I ask questions. When a doctor throws out a wrong statistic, I speak up, cite the better one. I am a genial, civil, compassionate but firm noodgenik. I thought a little charm would let me ask these detailed questions, as it does with my cardio guys and neuro-retinologist, etc. Uh-uh. NEVER act like you know or read or have a diff opinion with certain kinds of neuros (most?), unless you want even more brusque, or worse yet your records showing you as this or that negative, combative thing.
I understand Columbia/Presbyterian and of course the Cleveland Clinic do it right. And New Zealand (sigh). By looking at those programs, you can see the criteria by which to evaluate your caregivers. My advice: go low/local (yes!) or go to the top-top-TOP most if you can get in/pay for it. Never go to the simply famous/top. They are useless.
You may well be right re accuracy of DAT scan gcorral. Just a comment that it really isn't new to Europe having been available in since 2000 and has been used in over 300,000 patients in 32 countries.
THAT is news to me and now I will investigate more. Thank you! I love this board.
gcorrell, just something to begin with
pdf.org/en/science_news/rel...
earl.eanm.org/html/img/pool...
neurology.org/content/78/10...
And now I am intrigued by your reference to New Zealand, I want to know more!
I read an article about 7 months ago about them. NZ has a "federal" mandate for a PD/movement specialist per X number of citizens. They have resources for all aspects of movement disorder care, including home visits to check safety/diet/care, phys therapy, monitoring and online diaries, etc.
Wow, yes, our healthcare system is very broken. No, they do not like questions or any research you do on your on, even though it is your health you are paying them to care for...
I was Diagnosed with PD in July of 12. I had a DATSAN in Dec. Piece of cake procedure.
That DATSCAN came back negative. Meaning I do not have PD. They still don't know what
I have but I was able to get the PD monster out of my life. That is one valuable reason for
this new procedure, which incidentally, was approved by FDA in Jan. of 2012. Good luck.
Get the scan done. Just announced on news today that many many $$$$$ are being pumped into finding a cure for neurological diseases. Have heard several times lately that they
are bent on finding out about the causes and then curing it. I believe they will and very soon.
My problem is neurological but it is unkown the progression or severity of my symptoms.
I wish you the best. Follow "ProSavin". It will be in Phase !!. Oxford Biomedica in the UK
is the research foundation. Stay up to date on the research and cures etc. Not always the
symptoms. You will feel better.
CT scan with dye
Question. How frequently are people seeing their NHS consultant?
Newbie seeking first consultation advice
Shortness of breath after gallbladder removal
