Hypokalemic Periodic Paralysis Diagnosis
You can find all kind of information about this subject on the Internet.
BUT this here is my story and that’s very different then the most other
websites about getting diagnosed.
All my life I am having this fatigue and it got worse when I was leaving the army in 1983 at the age of 20. Sometimes it was a little better and sometimes it was worse.
What I know now is that is wasn’t always fatigue but mos of the time it
was muscle weakness. Because I have this all of my life I never learned the difference between being exhausted and having muscle weakness.
At the age of 31 (1994) I ended up in a hospital as a terminal patient and was diagnosed with Ulcerative Colitis. After being treated with heavy medications for weeks they decided to remove my colon and made an ileostomy.
When I woke up on the recovery room I couldn’t move at all, but it was my first surgery I was ever been trough so I had no idea what to expect.
The next day it was clear that my both feet got paralysed because of pressure points on the outside of my knees (head of the fibula, nervus peroneus) during the surgery.
The next two years I was trying to recover from this surgery and learned to walk with my paralysed feet. The harder I was fighting the less progress I made. I ended up in a wheelchair and with a walker, I couldn’t sit upright longer than 15 minutes and was so damn tired.
Doctors told me all kind of shit but only one doctor told me the truth.
He said “Jaap it’s very obvious there is something going on but we don’t
know enough yet to tell you what”.
The years after I was OK for one or two days, I could walk a little just doing things but I always had to rest in between. If I didn’t rest enough I couldn’t do anything at all for two or three days up to a week.
The strangest thing of all was I couldn’t handle temperature differences anymore. When I was to long in the sun or I cooled down a little fast I couldn’t move for two or three days..
Last winter there was a lot going on in our family and house I was been very busy for as far as I can. Then my mobility got down the drain completely.
I was completely immobile for almost three months, but I knew that if I had see the doctor I most likely got diagnosed with Parkinson’s Disease.
And I was sure although the way I move during an attack is very similar to a Parkinson’s patient I don’t have Parkinson’s Disease. Also because it can get better in a matter of hours and because of the temperature thing.
What I had discovered myself in the last couple years was that Ibuprofen was helping me a lot. When I took 2400mg a day together with rest my situation improved much faster..
First I thought because Ibuprofen slows your kidneys down so I loose less fluid. And I loose more fluid because of my ileostomy so it could make sense.
Later I discovered also if your potassium is to high you are not allowed to take Ibuprofen because it higher the potassium level..
When I read about the potassium level I immediately started looking for info about a low potassium level and came across a website about Hypokalemic Periodic Paralysis. Then the complete puzzle was put together.
I stopped drinking coffee, I limited the intake of sugar and order bags of potassium. And after a week it was very clear that was the solution I was now able to shorten the attacks from weeks to hours. It became also clear that I had sometimes one attack a day but also four or five attacks a day. It was and is still very challenging to master those attacks.
My wife and I came across the idea to make a video of the attack and the recovery in the next hours to show the doctor, so we did.
The video is shown here below.
The first thing our doctor said when she looked at the beginning of the video “OMG you have Parkinson’s Disease I knew it the minute you came in”.
After seeing the whole video she said “how on earth did you discover it is Hypokalemic Periodic Paralysis” and I told her what you just have read about the temperature thing and the Ibuprofen, etc.
Then she said I think you are right about Hypokalemic Periodic Paralysis , but I want a blood test and you have to eat a meal high in carbohydrate like spaghetti at noon and then you are not allowed to eat or drink until the test next morning.
It was horror next morning I couldn’t do anything at all, my wife helped me out of bed and into the wheelchair and to the doctor. It toke a whole day to recover with the help of Ibuprofen and potassium.
After that I was send to a genetic laboratory for a DNA test, we are still waiting for the results at this moment. But the Doctor at the laboratory also looked at my video and heard the story. She also confirmed that it is most likely Hypokalemic Periodic Paralysis although it is very rare..
The next step is waiting for the DNA results and whatever the results are seeing a neurologist. And fighting to get NOT diagnosed with Parkinson’s disease and let doctors ruining my life again (like they did with my feet).
Next post -> HYPOPP DNA test gone bad