We don’t know exactly what it is yet, but I recently get the help of a great Dutch professor from Groningen university. They are testing me on “Stiff Person Syndrome” at the moment.
update 18/09/2018: no Stiff Person Syndrome next an EMG examination
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.
Let’s hope there is a name for this…………….