Jak, I'm an RN and Australian too but I'd say that's about as far as it goes for us having things in common.
By tone it down it can and in my case does mean let it go.
If you do definitely have PD then anger can be part of the grieving process as you well know.
Perhaps sit back and take a chill pill. That's it, I won't reply to any further postings you make under this subject heading.

I may or may not have Parkinson's, no test is available to tell me or anyone here that we really 100% for sure know that is the correct diagnosis???
Hello people.......a doctor may at times act like a "god", walk and talk "god-like", yet they are not.

Yes, I feel for all people here, young and old being told they have this because I was told that several months ago and am trying to come to grips with all that I have seen and heard from many different opinions and sources. The TRUTH sometimes hurts, yet the truth will stand when all else falls into the recesses of time. I want to find out if there is something better than the Sinemet or other meds prescribed for this condition. I am not telling any older patients who know beyond a reasonable doubt they have this disease they were wrong for taking the medications their doctor gave them. Are we not all at least still "INDIVIDUALS" at the end of the day and able to make choices of what we take or not??? I pray that I am not guilty of making a false judgement against another person whether they have Parkinson's or not. I just want to be given the chance to voice my opinion here and offer an opinion; take it or leave it. Nothing more or nothing less.

I see that some here are at odds with differing opinions. It is still a free country at the moment, so choose where YOU stand. I only wish that we could all learn from our telling our thoughts without getting to take it all like we are fighting each other. Parkinson's is enough for any of us to try and deal with without being childish. Can we be civil here?

That is my humble opinion on what I have read in this thread so for. Hope this will pass inspection. I would like to enter this discussion if we can all try to learn from different opinions. I don't need stress and neither do any of us who have this; stress is the worst thing we can get.

just_me_77

You have voiced in a more diplomatic way whats mostly my view too. The whole diagnosis treatment problem, and I mean problem, is complex and individual. So as you say someone may learn from another persons story.

Thats a good thing. I dont get upset by these posters, as some friction happens in forward movement. Too much friction is counter productive.

Im going to keep posting what I have found out for those who want to read it. By all means have your say. If its counterproductive dont be surprised if your ignored

Jak

Its a pity you are cutting yourself off. You might find we have more in common. I noticed earlier you wrote this

Also we need to be captain of our own ships, if you think you feel you're doing well then you are doing well. From no levodopa to 9 a day!! Just doesn't make sense.

Thats more the ANZAC spirit. Its what I said earlier, not being controlled. See we have something else in common

It appears you are on meds already. You may have read that this thread is exploring the no meds situation / poor diagnostics. As a medicated PDer this may challenge you and I respect that

Jak

This is often a place of spirited discussion - with agreements and disagreements - so I think you will fit right in here.

There IS a diagnostic tool that will diagnose "Parkinsonisn" - called DaTscan. It's been in use in Europe for 10 years now and is coming to the US. It will show if you have loss of dopamine transporter cells or not.

As to our meds, I agree they are toxic. And after my dx I decided I would wait as long as possible before starting down that path. Unfortunately after only a year I started having neuropathic pain (burning at your nerve endings). It is excruciating and after living with that pain for about 5 months, I decided to start meds. Since the pain was caused by PD, the meds stopped the pain (for now anyway).

Jean

Hey Jean thanks for the welcome. I will trust you.

Sorry to hear about such bad pain. That sort of pain just may be the worst.

That scanner is impressive and if it stops even some misdiagnosis and wrongful medication thats a plus.

Still without an aetiology for PD 'they' still dont know whats causing the subtantia nigra depletion. And this is perplexing. Since these cells are dormant (autopsies show this) not dead it may well be these cells are just dormant because they are not being used (thats what the body does-use it or lose it).

This undermines the whole destruction of the cells theory that causes PD and hence the whole stem cell replacement theory will not work for long and its invasive which has real risk, (there are cases of wheel chair bound PDers post surgery and stem cells reverting to optic cells).

The thing is PD may be causing these cells to not be activated, hence they go dormant. What is causing signals to NOT get to these cells? " That " line of inquiry may lead to the aetiology of PD.

Some doctors use L dopa as a test for PD, but the irony is idiopathic PD wont respond for several weeks, up to ten weeks, while other conditions do respond more quickly to L Dopa e.g chronic fatigue, depression, drug induced PD, or any other illness where dopamine levels are low. Some doctors use high dose to 'test' for PD. The whole diagnostic story and history of PD does not show good results. They dont even consider that the brain may be intentionally decreasing Dopamine making cells because the brain is getting less calls to produce Dopamine due to........other causes

Jak

Some true believers may like this.

A new study has claimed that as many as half of all Parkinson's sufferers may not have the disease at all.

It has been claimed that thousands of people are being misdiagnosed with the condition every year because many doctors do not know enough about Parkinson's disease to give a proper diagnosis.

http://www.barchester.com/Healthcare...nosis/376/1035

Jak

good to see you are stimulating debate, stops the board becoming boring if nothing else.

You are right about the misdiagnosis of PD in the UK, however this study refers only to GPs. They are the first line of Doctors that you see and their job is to separate the "mundane" from the more complex. New guidance now stipulates that PD patients should no longer be diagnosed by GPs, but referred to a specialist within six weeks. Those who present at a later stage of the disease, or with complex problems, should be seen within two weeks.

More interesting would be the misdiagnosis rate of the specialist Neuros which seems to be around 20-25% although an exact figure is hard to get. Unfortunately you can be in a "wait and see mode" because as time rolls on PD (or not), generally becomes obvious.

Also don't make the mistake of thinking anyone on this board has a closed mind to PD thinking. You will see that a number of posters where/are involved in trials at the very "bleeding edge" of research and the "rat group" are active with alternative thinking.

Take care,
Neil.

I'd just like to interject on the datscan thing. I was given a datscan nearly 3 years after diagnosis, as the neuro I had then, who had never seen me unmedicated decided he 'could see no signs of parkinsons'. My grandmother had whatever I have, she died in around 1981, never medicated, but had shuffly, slow, masked face appearance for many years, and became very rigid and unable to move at all towards the end, though she was mentally intact. That is the reality of unmedicated end stage. So I know I have what she had, no matter what name is put on it. I had the datescan, without a prior MRI. It took a long time for the results to come, I have never been shown the actual scan, and the report said no signs of Parkinson's Disease.

This really shook me, because sinemet had given me back my life, I had some expression on my face again, could walk alsmot normally, and more importantly the awful chest rigidity that made me unable to breathe easily was gone. It was certainly not perfect, I was falling asleep a lot and my dose always wore off, I have never found a perfect balance that allows me to feel free of parkinsons.

Forgive me if this is boring to those who have heard this before.

I stopped going to most forums, stopped trying to find out more. In a lot of ways I was just shell shocked by this withdrawal of diagnosis. Let me say here that I had spent seven years prior to diagnosis trying to find out what was wrong with me, because I knew there was something, I was not neurotic, or imagining it, as some doctors tried to say when their long series of tests all came back negative....... I was devastated by it. And they were trying to stop the ONLY medication that had made a difference. I was, and still am on a very low dose, have never wanted to up it, and am happy that it is not managing all my symptoms, because the ones it does help are the crucial ones for me.

To cut a long story short, I was taken into hospital for a washout, and by day five all the PD symptoms I had before diagnosis returned, my new neurologist got to see what I looked like under the meds, and despite the fact that I do not and never did have much tremor other than on the lips, this doctor sent me home, and I went to his clinic a few days later, medicated and functional.

The crucial reason that I am telling this story, is that this neuro, who is very knowledgeable and has spent a life time observing PD, said that there is about a six percent failure of Datscan to identify PD. This is not the difference between those who do or don't have it. And this is given that nobody really has a clear definition of PD, we are all lumped into this bracket.

My parkinson's nurse is of the opinion that it does not really matter what name is put to it, it falls within the PD range, what matters is that I have some quality of life, which I clearly do not have without this medication. I worry about what happens if I start to experience dyskinsias, severlely. I worry about not being on the steady regime I now have, I worry that my neuro will retire and I will be at the mercy of someone who has not seen the evolution of PD treatment, someone who will not see PD in me BECAUSE my medication is working.... I am seven and a half years into treatment, am taking a third less sinemet than I was in the early couple of years, because I take entacapone, and I know that I have progressed some. But in those years I have single handedly brought up my son, who is now just about to enter the jobs market, and who has had to struggle through education with his own neurological issues. I could not have managed that untreated, and more than the other more physical issues, the awful masked face that I have unmedicated would have led to me being miunderstood and misread at every turn in some of the battles I had to fight on his behalf, education being every bit as muddled a part of the public sector as medicine.

Do I think there can be better treatments, YES
Do I think that medicine knows what it is looking at, NO
Do I think that it is worth fighting to ensure that other people, down the line ar going to get a better deal than PwP today, Yes

Do I think it is worth us bickering, or making divisions between PwP, NO

We are all in this together, no matter what eventual name they put to our varying conditions. We know there are subtypes, we know they may turn out to have differing causes, and treatments. We know that as yet there are no treatments that halt or reverse what is happening to us. And we know that what treatments are there are ALL flawed.

We also know that the best thing we can do is be very very well informed, and take note of some of the wisdom that Indigo talks of, and find out what is best for us personally.

We are all on the same page really............ we may not agree on everything, and each of us is coming from our own unique experience of what it is like to be under the PD umbrella.

Lindy

Jak, Thanks - not the worst pain I've ever had -- but pretty bad. And I agree with Neil about your stimulating debate. I've learned that there is room on this board for all opinions. So keep on posting & questioning.

Lindy - thanks for sharing your story. Sigh. I guess it's too much to ask for a definitive diagnostic tool for pd.

Jean