Thank you sea angler. Appreciate the info. BB thank you too.
From Parkinsons Disease Foundation
Q: Can DaTscan diagnose Parkinson's?
Dr. Beck: DaTscans cannot diagnose Parkinson's disease. These scans are used to help a doctor confirm a diagnosis. DaTscan has been used in Europe for over 10 years, where more than 300,000 have undergone the procedure. The results of a DaTscan can be used to help rule out other diseases that may have similar symptoms, like essential tremor, especially for individuals early in the course of their disease. However, there are several other diseases, multiple system atrophy (MSA) or progressive supranuclear palsy (PSP), which can also produce a loss of dopamine in the brain. A DaTscan cannot differentiate between those diseases and Parkinson's.
All of the above mentioned conditions produce parkinsonism I believe. The clincher is usually whether you respond to the PD meds. and clinical judgement. .
So hypothetically?? : i could be told i have Parkinsons this week because my symptoms are under control, but the following week they are not because i have not responded in the same adjudged manner so therefore I could be judged not. But the next doctor may not be of the same Opinion.
What a Great way too Live.
Storm BARNEY & Dr Beck have kept me awake most of the night.
I read 'some' about MSA & PSP.
Dr beck doesn't explain in his broad dat scan statement that msa & psp are much rarer in comparison to PD
I wont bore the Forum with all the differences just that there are around 3000 msa patients in the UK and around 4000 psp patients compared too 127 thousand people with PD in the uk.
On reading as nothing is 'definite'.
Diagnosis which again isn't 'definite' is gone about differently to PD is supposed 2 of 4 features over time were as msa is graded essential,suggestive,possible to give a score of less likely or more strongly.
msa is split into two groups msa-c & msa-p, & 3 symptom groups, some parkinson symptoms can feature early in both msa-p/psp but any symptomatic treatment sinemet/madopar response is soon lost. as both move on.
Good night.
Still awake..
Sometimes i post the biggest load of tosh on here, take no notice, this what ever it is label'd when doubt is put in your mind analysing your own symptoms all day long messes with the mind big time.
Hi there Sea Angler,
Oh dear, I am sorry to have been the cause of your restless night. I just thought that a little clarification might help - obviously not - but there have been rather varied statements made about the Datscan lately.
One reason I lurk instead of logging in straight away is that it gives me pause when I am tempted to post
because I have to think to myself "Is this really worth the bother of logging in" and I did think it was
Thanks for the helpful added information about the rarity of these other nasties. I did know but as you say one has to call a halt somewhere . As you also say whatever it is if the meds help that's the main thing. My dx changed from an initial letter to the GP of " probably idiosynscratic Parkinsons" to a letter to the GP 12 months later with the probable missed out from which I was left to conclude that the dx was pretty definite. And they wonder why we go on the internet in search of information
It wasn't you,
It was my own self doubt, i have a piece of paper with a diagnosis written apon it, but what is that worth when information tells you a test is worthless, many of our symptoms can fit other illnesses and individual symptoms we have are not always fitted into the diagnosis we are told we have. we are left too wonder without continuity and have too search for ourselves.
Hi Sea Angler
I can understand your frustration at the whole test thing. All these scans etc are really driving me to despair. I know for sure my results have gone to the consultant here but no one yet has rung or written. I can't sleep for worry and it is constantly on my mind. Don't these people understand how it feels to b kept waiting for answers! I've left yet another message at thrust of appearing a pest!!! Very unlike me but I need to know one way or another my diagnosis. How do other folk deal with this? Sorry, I sound a real moaner today!!!
hi
in my case i waited 8 weeks to be told.
from letters i obtained the Neuro had the info/result of the test the Next day and within the week the Gp practice had the result, Neither thought too let myself know, on arrival at an appointment 8 weeks later the Neuro was somewhat surprised having thought he had left it too the Gp practice. I had an appointment with my gp within those 8 weeks for an eye infection the results wern't mentioned.
In the past i have tried too contact the neuro via his secretary but she works a random 3 days during the week i have left message which i dislike doing because after all what can you tell a machine? it doesn't interact, on one occasion which she must of been there called me back within a few mins.
Appointments with the PD nurse are usually regular and on time if she says i'll see you in 2 months it is , appointments with the Neuro are irregular if he says 4 months it'll turn into 6 or 8 months.
Goodness that was bad. 8 weeks! I am only hoping that it's nothing urgent otherwise they would have rung. Well in theory that is!!
Yes,the test doesn't mean it has too be, for some in the past after all the tests it turned out too be something simple and easily sorted.
IMO PD drug therapy is dependant on creating the best condition for your drugs, in particular levodopa, to work effectively.
My PD is up and down like most pwp but as long as I have an explanation for why I have worn off I'm ok.
I have confidence in myself that I can sort out any problems and usually I can.
I have no official training, Ive found out more from other pwp than my neuro or pd nurse, though they usually confirm that what Im doing is correct.
If you can get your pd drugs to work its likely you have pd. What happened to the Apomorphine challenge?
Re MSA / PSA
I have met 2 members of this forum who have been diagnosed with MSA. As I understand it your pills are ineffective against pd symptoms. One member was dx with pd given sinemet plus x 3 a day with no explanation re timings etc. The treatment was ineffective and the patient was told he could not have an increase in meds, he was then diagnosed with MSA.
He spent the next 5 years spending savings on holidays as he was expected to die within this period.
A chance meeting with a MSA nurse led to a 2nd opinion and a dx of pd. A better drug regime worked for him.
Untreated PD is painful and leads to death often by pneumonia.
I have also met a member of this forum dx with PSP, who imo didnt take pd drugs correctly. All pd drugs have been withdrawn.
According to the writings on this forum delays in diagnosis are rife.
IMO we need to improve the training of our medical people and pwp need to be a part of this process.
Would the PUK be prepared to back such a programme.
L
Hi Leyther,
Something that really bugs me is the lack of interest in the nausea which some (many?) people experience when first taking Sinemet plus - I can't speak for other PD meds: To my knowledge this has lead to people concluding that they can not tolerate Sinemet and a drug regime is based on this so called "fact".
They are not told that until they get to 25/100 mg x 3 tabs there is not enough carbidopa for it to have its incidental effect of dealing with nausea caused by the levadopa
Presumably for fear that the suggestible patient may imagine nausea, they are not told about and/or not given domperidone to ease the nausea which believe you me made me think I was going to die. Montezuma's revenge with a vengeance
By the time I saw the neuro in three months after diagnosis and starting meds., the nausea had stopped, .
I persisted with the Sinemet because I was more frightened of my tremor than the meds.
Eilleen
Ive known people offered mirapexin without being offered domperidone and rejecting it.
Mind you imo not a bad thing.
You are right with sinemet and probably madapor re nausea.
Imo and experience something as simple as an arrowroot biscuit can help, we become obsessed with taking them on an empty stomach.
At the moment the biggest problem I can see is pwp on Azilect (rasagiline) which is given on its own at doses of 1.0mg per day.
The manufacturers advice is to reduce to 0.5mg on introduction of levodopa. Nausea seems to be the problem if you dont reduce. If at 0.5 mg its still a problem then ask to come off it and try selegiline or none at all.
L
Hi Leyther,
Rasageline never made me nauseous but I am interested in the advice to reduce to 0.5 mg except that I was on the sinemet before the Rasageline which served to smooth things out for a while. I am fortunate ((if anyone with PD can be said to be fortunate) that I have responded very well to the drugs so far but I have been very cautious. erring on the side of under-medication, I am on the neuropatches now even though because of my family history I was frightened of their being a dopamine agonist .. I am now on patches with no side effects which I put down to its having been introduced at a slow pace - 2, 3, 4, 5 and now 8 mg.over the course of more than eighteen months The only untoward event was being woken in the night an isolated episode of distonia which went right down my parkie side leg and frightened the wits out me.This I put down to the newness of the drug and the fact that unbeknownst to me the patch had fallen off. I did not think of the obvious and could only think initially that t I was having a stroke until my brains started working.
Getting the patches to stick is another issue. I asked my neuro if it mattered if a patch did not really "stick fast and he said no, but not very convincingly so I think he relies on the fact that it is 24hr release with a certain amount of build up over time to smooth out accidental dips in what is absorbed. . The leaflet says that the shoulders allow a great. deal more through than elsewhere, I have the figures somewhere.
.. I could go on - actually I think I have already
Best wishes,
Can I ask a question? When I first start on my meds what will be the first thing that I'm likely to be given. She said it would be a low dose but I've no idea what until I see GP?
Hi lexi
I don't know too much about the other Meds but i was started on sinemet a low dose of that which was gradually built up over a few months with monitoring , starting on sinemet if that's what it'll be might be 2 or 3 pills a day 50/12.5 or 62.5 as they say.
there is Branded & generic versions, i started on branded sinemet but as the dose was built up i was moved over too generic and I noticed it wasn't as effective as the branded i was taking more for less effect, My Gp practice got in a panic not knowing what to do & the pd nurse moved me on to Madopar.
Sinemet is equally as good as Madopar, if either you may notice some nausea to begin with which should soon pass, if not others will advise you on other Meds.
Thank you so much SA. That helped a lot.
there is such a high variety it is impossible to predict i thing it depends on your consultant.
if affected by nausea ask for domperidone.
BB xx
Hi. I was diagnosed in June, started on Sinemet, which I found effective, particularly against the tremor. I have been lucky as it seems to be reasonably well tolerated..I was reassured by thee neuro on Monday that it is a low dose and I can take more if I needed.
Good luck. It`s a huge adjustment.
Frances