I can certainly understand your anger, but have to say that when I looked to see what the people misdiagnosed were found to have, four of the 12 conditions were ones that only a few short years ago were actually called PArkinsons plus disorders, and in many countries are still considered PD variants. MS some times occurs with parkinsonism, and sometimes they occur together, making diagnosis difficult. NPH is not as well-known as it should be but looks very like PD, it should be picked up on an MRI with no problem, so I guess that some of those people were diagnosed a while back before it was publicized. Essential Tremor and PD often masquerade as each other, and are sometimes difficult to differentiate, ET also can come with parkinsonism. Wilson's disease should be easy to spot, Huntingtons and ALS will most usually show themselves fairly quickly, if they do not they are somewhat atypical. A number of these conditions are very much worse than IPD, are faster developing with worse outcomes. Some of them are initially responsive to dopa, and once that does not work there is little else that does.
Many patients are not immediately diagnosed, it can take years of doctors excluding various conditions until they come to PD. If a patient is dopa responsive then they are treated for PD. But mostly people go to their doctor because something is wrong with them. They do not go for no reason.
There are probably many people who have PD with no dx wondering for years what is wrong with them, but someone has brainwashed them into thinking that aging is like that and it is only to be expected. So it cuts both ways.
I know you have had a rough ride, but PD is a very tough disease to diagnose for all the reasons you have mentioned.
It simply is not right to say that PD is never excluded as a diagnosis, there are many who have gone through batteries of tests over many years, during which they did not have an effective treatment, and had a decresing quality of life. This happens because PD is OFTEN excluded on the grounds of the patient being too young, which can mean anything from about 55 downwards......
It is however not greatg to make a sweeping statement such as patients are married to their diagnosis. Initial treatment with dopa gives a dramatic response to people who are showing a gamut of PD symptoms. And doctors look for that, and if it becomes quickly ineffective they usually look for somethings else.
Arguably people should not be treated if they only have a little tremor in one finger, or their symptoms are not causing them any functional problems.
If you truly do not have PD you have been dealt a really bad card, and your struggles to get off dopa are no easy thing.
On the other hand for people who are struggling with the reality of PD and the reality of medication it can be challenging to read your posts. There can be few of us who have not had a good, almost normal, day who haven't hoped against hope that PD was not real. Or that they could turn back the clock.
There have been a number of people over the years who have been thought to have PD who have been re-diagnosed with something different, or had the PD dx withdrawn and people here are always glad for the ones who get away. When you win your battle with dopa we will be glad that you have got away, too.
There have also been more than a few diagnosed with ET who have after years been told they have PD.
One of the reasons that the PPMI study is so important is because eventually it will lead to more subtypes being found, and the 23&me study will help identify those who have a genetic type of PD, and it maybe that eventually it will differentiate in many disorders each with a different type of treatment.
We are still learning, and our doctors are too.
You say that you are improving, and that things are gradually getting better. I hope this continues, and that you are getting stronger. I also hope that you will come to terms with what has happened to you and find some peace, instead of the anger.
Lindy
