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

What is it?

We don’t know exactly what it is yet, but I recently get the help of a great Dutch professor from Groningen university. But unfortunately without any result so far (12/22/2018).

My personal opinion:

This is what I discovered after 24 years searching and asking everywhere I can. Of course it’s not medical proof of anything at all that’s clear. But how close can you come to a diagnosis by searching the web and asking people?
I have wrote my conclusion down here below, lets see (hopefully in the near future) if it is possible to find a diagnosis on the internet. Or did I find something similar to the final diagnosis or something way off. Point is my own internet diagnosis is pointing in a direction. Together with my video it made neurologist understand what is going on and that’s important too.

It looks like “Hypokalemic periodic paralysis (HYPOPP)” on one hand and on the other hand it could also be Paramyotonia congenita (PMC), I will tell you why.

When I am getting an attack I first get stiff, arms, shoulders, legs, back, neck and face. When the attack is lasting the tremors are kicking in and after that My muscles are getting weak and I get paralyzed.  So the first part looks like PMC and the second part looks like HYPOPP.  The triggers I am reacting on are all the trigger known for HYPOPP but they are also known for PMC like rest after exercise and reacting on getting cold. Except I am able to recover  faster by taking potassium and I am most likely reacting on carbohydrate-rich meals.

How I discovered that potassium has a positive effect when am I having an attack.
For almost 25 years I am using Ibuprofen 600mg when an attack is lasting to long or is very serious. I have had attacks that lasted for weeks and even months, probably more attacks following each other up. Ibuprofen four times a day 600mg improves my well being by clearing the fogginess in my head and if the attacks are taking very long it helps clearing the depression and anxiety I’m getting. Not all the way but just enough to feel better and it helps a little to lighten up the stiffness in my body.
In early 2016 I discovered that people with a high potassium level are not allowed to take Ibuprofen because it raises the potassium level. So that could be meaning that my potassium is low during an attack. I ordered potassium on Ebay and tried it. Taking 1mmol potassium per kg body weight during an attack shortens the duration of the attack from days or weeks to 4 a 5 hours max. But I can ‘t prevent getting an attack by taking potassium in advance.

The fact that the attacks can last for days or weeks are not normal for anyone with HYPOPP or PMC that’s clear. But what if the next attack is coming before the first one isn’t over yet? Since I am using potassium attacks are lasting for 4 to 5 hours top..
The muscles in my arms and shoulders are like I am visiting a fitness center twice or three times a week, but I don’t. I even have problems to put my coat on and tie my shoes because of the ever lasting muscle strain, so no fitness center for me, that could be a sign of PMC (muscle hypertrophy).

During my life my situation is getting slowly worse, the muscle strain is getting worse and the attacks are coming faster as I am aging. Except during periods of mental and/or physical stress like a severe operation  this unknown disease is getting worse in no-time. After that it takes years to get a bit better but I never recover again maybe 10% is coming back but that’s all .

What I am doing to prevent an attack:

  • I don’t eat carbohydrate-rich meals anymore.
  • I don’t sit, stand, walk, laying down to long
  • I get up at night at 03:00 AM to walk, eat a little and take 20mmol potassium
  • That’s what I am doing again at 06:00 AM to prevent getting an attack after getting up and that helps.
  • Resting during day-time (after doing the dishes or cooking diner)
  • After I change from exercise or to resting  I take 20mmol potassium

What is tested so far:

  • Multiples sclerosis  1995, negative.
  • Parkinson disease 2017, after seeing the video the doctor came to the conclusion negative.
  • Stiff Person Syndrome 2018, waiting for results.
  • Stiff Person Syndrome 09/18/2018 negative.
  • EMG examination 10/22/2018 negative
  • Severe attack at the doctors office  they don’t know what’s wrong and send me home  12/17/2018 (see video)

Let’s hope there is a name for this…………….

Jaap Rumping