Negative datscan


#1
Hi Just received word that my datscan was clear Havd to wait and see neurologist in March now It was bim who first mentioned pd when I first saw him following tests he did at the clinic Im confused now symptoms still there can it e pd with negative scan

#2
thats good news.

#3
You would think so but it was like being hit by a bus I felt so deflated with no answer again It will be a long 6-8 weeks untill my next appointment I have since read that it can still be parkinsonian even with a negative scan It may sound odd but it would be a relief just to know

#4

Hi Nevbar, 

I had my datscan three years ago and was amazed when my consultant told me it was clear as he had been 99.9% sure and I had all the symptoms pointing to PD.  Like you, I also felt deflated!  However, my consultant said he had not seen the scan himself and had only seen the report from the radiologist.  Next time I saw him, about three months later, he had seen the scan himself and said that it did show a slight indication of PD.  So, the scan is not always absolutely clear.  I was started on a low dose dopamine agonist and felt so much better than I had done for a long time that I was then diagnosed with PD.  It is horrible having to wait and wait for a diagnosis and it was a relief to finally know for sure.  I hope you get a definite answer one way or the other soon and wish you well whatever the outcome.

Lexi


#5

Hi lexi

Thanks for that info it makes me feel better knowing someone else understands

I will keep you updated, like the dog, we have two labs which are great

Nevbar


#6

Thank you Nevbar.  Our little dog is a Sporting Lucas Terrier just over a year and a half old so quite lively but she is great company.

I will keep a lookout for your updates.

Lexi

 


#7

Hey nevbar

Sorry to hear that, i know how you feel, you think you have it all ready, read everything, finally ready for them to tell you that you have PD, but they say its something else that they don't know is like being hit by a bloody elephant. 

But like they said, just let them see it for themselves, and know still people on here to talk to! :)


#8
Thanks silentwolf I find the forum is a great way to explain your feelings to people who Understand Thanks again

#9

Hi nevbar, i don't know if a clear dat scan means no PD i hope it does for you.

 

One point there is also essential tremor that looks very much like PD.

my advice to you is do some research on ET. Again i hope i am wrong,

Let me know how you get on.

BB xx


#10

A datscan only helps with the clinical diagnosis of Parkinsons Disease by ruling out similar conditions.

The following US site explains how:.

 

http://www.memorialcare.org/about/stories/datscan-imaging-clearer-picture-parkinsons


#11

Hi BB

I have read up on ET at it doesn't seem to be that. The tremor is only on one side and mostly at rest.

I also have balance problems, forgetfulness, mood swings, aching neck, right shoulder and arm among others

which don't appear to be associated with ET, however I will keep an open mind until I see neuro

Thanks again I will keep you updated


#12

Hi EP

I have read this article before among others but my other symptoms do not appear to be ET

I will wait and see what neuro says

Thanks again for your info


#13

Hi nevbar like you and lots of others I have just had a Dat Scan I will not be able to see my results as mine was done in-regards to a clinical trial. Can't say it was a enjoyably experience in fact I would go as far as to say it was horrible 45 mins long one of the longest they do and your head strapped down.

The only difference I'd say is the fact that already I have my diagnosis.

I hope you get your answer really soon.

 

BBx

 


#14

yeah i go with that bb.did you have the radio active dye injection aswell i take it everyone as to for dat scan


#15

Yes gus I did but it's a 50/50 chance of kicking this b**** into touch so although I was not particularly happy I will put up with it. BB


#16

 

hi Gus

When i had mine at addenbrokes.

the syringe was in a lead vase, lifted out by tongs, the nurse took a couple of measurements i presume too check the radio activity of the isotope, the syringe itself was covered in a lead jacket, you couldn't see any of the dye and after she injected it she also added some water solution.

And that was that for 4 or 5 hours i was free too wander the hospitals shopping and food complex which is large and impressive like it would put any town too shame, until the afternoon, the scan it self was totally different and kinder in my opinion too a M.r.i, a little russian doctor adjusted a panel closely to slowly rotate around my head, i laid back for 20-30 mins and almost fell asleep

He woke me almost, ''that's it  all done'' he said, i asked him what happens next, he said ''your results will be with your neurologist by tmrw afternoon, you should make a emergency appointment with your neuro'' he said.

It was a subtle hint from him in a way, my results were with the neuro the next day as he said, and with my gp within a week, i have a copy i later got of the letter tween addenbrokes the neuro and the gp, but No one fought too tell me until 6 weeks later.the neuro had told the gp, but the gp hadn't told me and when i turned up for appointment with the neuro he thought i'd already been told the results, a c*ck up.

the results anyway showed i have reduced uptake on both spheres(sides) of my brain, hence PD diagnosis.


#17

hi sea angler, not to sure about the syringe but i was not allowed to leave my ward and if i wanted a wee had to get a bottle as radio active not allowed to go in normal toilet, also not allowed near pregnant women.Hows the test going bb feel any different.


#18

 

I wasn't a 'inpatient' or 'on a ward' Gus.


#19
Maybe they do it different .yes I was inpatient

#20

When I had mine I was given a capsule first to isolate my thyroyd then 1 hour After I was given the radioactive dye, 

I was then free to even go out The hospital if i wanted and reported back after4 hours for the scan

Although My head was taped down i didnt find the 40 minutes too bad