Not possible to get Diagnosed

Potassium Related Periodic Parkinson Disease

I have been examined a dozen times the last 24 year, a total of 6 neurologists, 5 family doctors, 1 rehab center and 2 hospitals. So far no doctor can tell me what is going on or is able to diagnose me, and I don’t think they ever will be.
There are several problems we are facing on this one.
Neurologists can’t diagnose you with this because the attack is different every 30 minutes. My attacks do come like “Periodic Parkinson Disease” (non existing disease yet) to get rid of the attack asap I have to take potassium. And after a few hours the “Periodic Parkinson Disease” is gone or at least almost gone. Neurologists can’t diagnose you with Parkinson disease either because it comes and goes and it is potassium related.

Further problems to get diagnosed is that my potassium level in my blood is normal, and the EMG is normal too. I do get paralyzed after the “Periodic Parkinson Disease” part of the attack but for this one we face another problem.

Here in Germany and in the Netherlands when the neurologists examines the patient the moment the examination takes place is the image the condition they use to diagnose you. Even if you get paralyzed 15 minutes later still in the doctors office that doesn’t count. Just because it isn’t during the examination. Even you if you can’t move 15 minutes after the examination takes place they will send you home. When you are lucky the neurologist will help you to get in the wheelchair and put your coat on but will not write anything about this in there report (happened to me twice). Also when you are moving normal on your way to the neurologist and film this and show it to the neurologist it won’t count in there final report. Unbelievable you think, it happened to me twice..

The people who are suffer from this are not the problem but how a neurologist think is the real problem. It is proven that all the people who are diagnosed with Parkinson Disease a stunning 22% seems to be misdiagnosed when they look at the brains after the patient died (in the Netherlands).

source dutch: Bioloog dr. Inge Huitinga
https://www.telegraaf.nl/nieuws/136967/te-vaak-missers

I know a man with the same condition as I have, same reaction on potassium who was diagnosed with Parkinson Disease in Germany. On day they send him to a rehab center and the physiotherapist from the rehab center send him home because he said you don’t have Parkinson Disease and I don’t have a clue what it is….
And there are thousands of people with similar problems without a diagnosis and no one helps them.

Unfortunately it seems Neurologist stop thinking when they start learning, so we have to wake them up..

DISCLAIMER:
Potassium Related Periodic Parkinson Disease is a name I have made up it is non existing until now!

Jaap Rumping