periodic paralysis muscle disorder
I don't look like the sort of guy who'd suffer from intermittent muscle weakness, but there you go.
This is what I refer to as a flaccid episode (not that kind of flaccid; get your mind out of the gutter), where my muscles are relaxed and weak, there isn't much twitching or fasciculation and I'm generally a bit floppy. My muscle tone is poor for much of the video, allowing my abdomen to distend at times and giving my body a soft appearance, but I regain some muscle tone for short periods while moving around.
I get tense episodes at other times, where my there's a lot of tension in my muscles, a lot of twitching and fasciculation, and instead of being floppy like a rag doll, my body tends to remain in a position like a manikin; if I raise my arm, for instance, the muscle tension will tend to keep it in a raised position without any concious effort on my part, and it will actually require a concious effort to lower it from the raised position. See this video for an example of a tense episode:
• periodic paralysis tetany
The episodes are accompanied by facial flushing and cognitive impairment. I also have polyuria, passing 3-4 litres of urine a day (normal is 1-2 litres, and polyuria is anything over 2.5 litres).
I'm being investigated by a neurologist at the Southern General Hospital in Glasgow, and I don't have a definitive answer to my problems. This is the closest match for my symptoms that I've found so far:
periodicparalysis.blogspot.com...
Пікірлер: 18
I wish you the very best living with your conditions. I find it interesting how you film yourself . I have a slight sleep apnea problem snoring and breath holding. You have given me the incentive to turn a camera on my self one of these nights. I love your amphibian films .
Hi, thanks for having your experience, thanks to that I have discovered is happening in my body. I suffer from chronic fatigue syndrome, myalgic encephalomyelitis. I have these horrible episodes, with spasms, fainting to the floor without losing consciousness, my body shakes unable to control. Many times this happens to me at night. I have had panic attacks in the middle of hypotension. It's weird, my body suffers hypotention and joint hypoglycemia. I researched a lot, so I know what happens! This is part of myalgic encephalomyelitis (ME) I have these episodes with nausea and sometimes vomiting. Please continue to provide information and assistance. Thank you.
Feel for you man, hyperkalemic periodic paralysis and myotonia, it may be worth looking into cannabis, I find it helps when tense, or at least seems to balance me a little when some muscle groups are overworked and others seemingly doing nothing. All the best
I have Primary Periodic Paralysis. Lots of awesome info to help you on Periodic Paralysis Network.
I am straight, but my heart goes out to this person trying his best to deal with reality of his situation with faith and not frustration, god bless you bro....
@neenlancaster
6 жыл бұрын
what does being a decent human being have to do with you being straight lmao
@mytwentyeeonechemicalroman2401
5 жыл бұрын
Lmao why’d you feel the need to clarify your sexuality
Man you need have 911 on some sort easy access speed dial.. some serious epispdes you cant even breathe
@avg1712
3 жыл бұрын
Most of the time, You cant even communicate during an episode.
Wow, I've never really seen another HKPP have an attack
@jamesrking1 Thanks; I'm hoping that the videos will be helpful in arriving at a diagnosis, and I've made some useful contacts through people watching them. I have a webcam set up so that I can quickly start it recording when I'm having an episode.
Myasthenia Gravis and Neuromyotonia should be ruled out via testing. Find a doc that will give you the "tensilon test" to rule out MG. Have blood labs taken to test for potassium channel antibodies. Have an EMG performed as well. Then have yourself tested for Lyme through iGeneX labs (Western Blot IgG and IgM) and don't use a different lab or they another test or they will miss it. Let me know if you have had any changes.
I have the same problem. It sucks to not be able to sit up without an extreme effort
@sscgktrick7215
5 жыл бұрын
Morrighan I have also suffering
Have you tried stretching your abs out by laying on your tummy and pushing your hands up so that your head is up high but your lower abs are touching the ground? It's a yoga move but not sure what it's called. Also, maybe doing some yoga might help you too. But take my suggestions with a grain of salt as I know nothing about this, it's just a thought.
Hey. I experience the same body weakness. Personally refer to them as "episodes of paralysis". I'm 20... It is terrifying. The other day it happened 7 times. I would like to possibly chat more with you about this? Idk, it's just nice to know I'm not as like " alone".
@sscgktrick7215
4 жыл бұрын
I have same problems but I am good
Watch Diagnosis on Netflix. There is a little girl who has what you do. She has 300 episodes a day each lasting up to 30 seconds and has only met one older child who has the same as she does. She is being placed on experimental medication etc at no cost to her family. First two letters of the condition is KT and it ends with a 1. The more individuals who are found with the extremely rare condition (it's caused by a deletion) the better the chances are of getting the research and stuff necessary to improve the lives of people like you. If you haven't already, try to find out the best top of the line medical facility you can go to to undergo testing and stuff.