It's official


#1
Well, it's official. My DaT scan last week has confirmed a dx of Parkinson's Disease or Parkinson's plus.

Strangely, despite expecting this result I was still (literally) a bit shaky when given the news - excuse the pun! I think a little bit of my bravado over the last 6 weeks whilst waiting for the DaT scan was wrapped up in some minor denial and hope of something different, though not sure what. My view up until now at 45 years old has been of relief that it wasn't something worse (MS, cerebral tumour). I have received a quick diagnosis. I was only referred to a neuro in November after initial orthopaedic referral for a painful shoulder in the Autumn. However, now I have a confirmed diagnosis it is all a bit more real and I'm not sure I've fully accepted it yet. Not seen my neuro about any medication yet, so new decisions to make yet.

I seem to have taken my dc in a very matter of fact way, not shed any tears or anything. Should I expect to come down with a bump any time soon?

#2
So sorry to hear of your confirmed diagnosis. I was dxd at the age of 38 last August after a DaT scan. Nothing prepares you for hearing it. Immediately I was in floods of tears, it was the end of the world. But it didn't take long to come to terms with it. For the majority of the time since I too have coped better than I expected. I put it down to having a great support network, thinking of people with a worse diagnosis than PD and staying optimistic for the future. Don't get me wrong there are good days and bad days. But let's not allow this "thing" beat us. Stay strong!

#3
Hi Silverkins, Glad to hear you have finally had your confirmation, but sad to hear
of your dx, of PD or PD plus. I have not heard of PD plus? Like you say its just such a relief that it was nothing else,because I know what terrible things go through your mind,its the unknown. Did you have private treatment?I mean seeing the Neuro and then having a Dat scan, its just I have read that the NHS don't always use a Dat scan due to costs? maybe I have got that wrong? I am waiting for my OH to see a Neuro will be Wednesday, don't know what to expect,but I don't know if he will get Dx on first appointment or not? Ive been in bits waiting for dx,because I fear the worse. Chatting with the members on here has helped me tremendously, got to really admire them, and all we can do is be as strong and positive as they are. One thing I have noticed in the past day or two,is my OH seems himself again,must be the sinemet his GP prescribed. Its 11 days since he started them but has only had the 3 a day for 7 days today,so it seems promising that it PD don't you think? Love holsx

#4
parkinson's plus is a label for a group of unrelated,[u] relatively rare[/u], diseases that seem similar to pd. Generally the prognosis is worse to worstest. They are msa - type p, psp (dudley moore disease), cbgd (alien limbs - rare or perhaps rarely diagnosed), dementia with lewy bodies and some even rarer ones.
They tend to affect more parts of the brain than pd and usually involve tau proteins rather than alpha synuclein.
i think a lot of peoples diagnosis are so obvious that dat scan isnt needed and doesnt rule out msa.
"The product is designed to assist the clinician in the differential diagnosis of tremor associated with PS vs. essential tremor (ET). DaTscan is not designed to differentiate among the parkinsonian syndromes (another name for parkinsons plus."

#5
Hi Turnip, That all sounds extremely complicated, you are obviously very knowledgeable in this area. Many thanks for explaining the difference, it is much appreciated, I am learning so much on here. Can I ask you? or anyone else that might know? what the cost of a DAT scan is if having it private?, and any other scans that may be carried out privately? if my OH needs any we will have to pay,and its nice to have some idea of what to expect. I did see on a search I did that a chap in the States was saying he needed to find $10,000 as it cost $2,000 for the initial injection of dye???????????????? all new to me, I thought maybe I read it wrong? but I hadn't. Maybe its different in the states? I know he was talking dollars but it still seems an awful lot? any ideas or advice would be more then welcome. love hols x

#6
datscan is actually the name of the radioactive substance that highlights healthy dopamine cells. personally i think getting one privately would be a complete waste of money.
if he has pd the treatments will work, if they dont then it might be something else but most probably something that a datscan wouldnt help identify. A cheaper test for essential tremor is a single nice glass of wine - if the tremor stops it is more likely to be essential tremor. the other conditions are very rare and rarely improved by sinemet (msa is a bit for a while).
the best and hardest thing to do is relax, let the neuro find the right mix of meds (it may take quite a while). if it all works out things should settle down to a quite ok pattern for many years.
cheers
t

#7
Thanks Turnip, Lots of good advice as usual. When we go tomorrow If the Neuro suggests a Dat scan I will tell him we don't want one? A bit awkward, as its the first consultation,I will tell him the bit I know about the scan, and say it seems unnecessary. Fingers crossed for tomorrow, hope all goes well. God bless love holsx

#8
oh dear - no - your neuro knows best and would not do a test unecessarily - what i said was i wouldnt pay for one privately.

#9
Dear holly tree

Wishing you both well for your appointment tomorrow . When my Hubbie was diagnosed 11 years ago Dat scans were not used . He was tested using the basic methods which are still used touching thumb and finger together as quick as possible , walking I straight line , hand writing and drawing circles . He was lucky or unlucky depending how you view it as was diagnosed on first visit he had no symptoms prior to visiting GP with a ? Trapped nerve , they ruled out essential tremor and as your o/h started medication which helped and confirmed diagnosis .

Wanted to reassure you that you may not need to go down the scan route what's been identified so far may be enough.

No matter how many things have gone through your heads when you receive any diagnosis it us still a shock so take care of yourselves

Regards x

#10
Hi Turnip, and Bubble, I know what you were saying Turnip, I agree, there should be enough evidence without scans, and we certainly all want to cut costs when we can, I suppose that is what I am saying, just because we are seeing a private neuro, I would be upset if they were to offer expensive tests when there is no need, especially if the cause is obvious. Thanks for your wishes for tomorrow Bubble and your reassuring words, greatly appreciated, many thanks for your great advice Turnip, will keep you posted, Good Night love holsx

#11
Hi HollyTree


hoping things went ok yesterday at appointment , been thinking about you both x

#12
Thanks all for your replies to my thread. I'm alright again after a couple of days of feeling a bit wobbly and wanting to hibernate! In answer to your question, no I did not go privately all NHS. We have funding locally for 12 DaT scans a year and in view of my age I think my neuro felt I was an appropriate candidate for one of those 12. To be honest though it didn't tell us anything more than clinical observations showed or probably a levadopa trial would have proven. I guess if the 12 aren't used in the year funding will be lost so I'm not complaining. Nice to be 100% sure of dx.

Just waiting to see my neuro again now so we can discuss plans.

Hope all goes well with your upcoming appointments.