Periodic Paralysis Association - Who We Are, How To Help

[diverphd]

.. have been hospitalized in er six times since august. since this is all new i am calling first thing monday to find out which type i have exactly and will follow procedures immediately.. the meds seem a risky.. this all started three years ago when my pacemaker was failing and went undiagnosed for six months. that threw my thyroids off and still can not maintain euthyroid. thank you... you are saving my sanity and life..

[diverphd]

it is thanksgiving and i am soooooo grateful.. have been hospitalized in er six times since august. since this is all new i am calling first thing monday to find out which type i have exactly and will follow procedures immediately.. the meds seem a risky.. this all started three years ago when my pacemaker was failing and went undiagnosed for six months. that threw my thyroids off and still can not maintain euthyroid. thank you... you are saving my sanity and life..

[Peter5930]

For years, people have been insinuating or telling me outright that it's all in my mind and I just need to get more sunlight, more exercise, get a job and generally pull myself together. Take a look at my videos and decide for yourself if it's all in my mind.

[dlamaster]

Just viewed this for the 1st time. I can relate to Dr. Levitt's experience of low potassium Periodic Paralysis. The sudden onset of paralysis to an otherwise healthy patient is best described through my personal experience as being "trapped". It is claustriphobia and frustration wrapped into a temporary but impenetrable segment of time. It forces you to wait, but panic can set in due to the possibilities of falling, sliding off the bed/chair, cramps, muscle pain, mental confusion, etc.

[gerrixx]

It's not that I'm glad there are more like me but I wish I could help those out who are being affected by it for the first time... How I wish I had someone to speak to back then. Eating Vegan and low carb completely keeps me moving... Stay away from Little Caesar's Pizza!

[Allibaby78]

These conditions are dominantly inherited. Rare cases are normokalaemic. Bulbar or respiratory function is usually not affected.

In the most common form hypokalaemic periodic paralysis, weakness is most common in the morning and is triggered by emotional upset and large carbohydrate loads.

Diagnosis is helped by the finding of low serum potassium during an attack.

Treatment is with oral potassium supplementation.

Patients may develop a myopathy in the long term.

[398Twix]

I remember this happening to me for the first time when I was 5. I had no idea what it was. I diagnosed myself in high school with hyperkalemic periodic paralysis and I've spent my whole life (21 years) always trying to find a way to hide it or come up with excuses for my odd weakness. I live with it everyday, but I've gotten used to it and can usually get by without anyone noticing if I can help it. The sad thing is I won't be able to have kids because I don't want to pass it on.

[johndemmerson]

Only just been diagnosed after years of frustration and finally being told by a consultant, that they had no idea what caused my problem, so I was to adjust my life and get on with it! I got angry and insisted on more tests. Finally, an appointment out of the blue, and a professor Al-Din who knew what he was talking about. Now I have a problem. I am also type two diabetic. Next challenge is to work out a diet to cover both!!

[sverdery]

I was affected around 3.5 years ago, and I thought I was the only person in the world with this syndrome. I looked up periodic paralysis on youtube and this video came up and just made me bawl! To know that there are others out there that know what I go through... it just means the world to me! THANK YOU SO MUCH FOR POSTING THIS!!!!!

[Eric1989Aballa]

wow!! i thought I'm going through it solo .. right now it attacking me luckily it just mild attack a cant hang up my feet and cant stand solo always relaying to my mom.... huhuhu... swear i dont skip eating bananas and other good source of potassium..

any way I'm from Philippines..

[Eric1989Aballa]

wow!! i thought I'm going through it solo .. right now it attacking me luckily it just mild attack a cant hang up my feet and cant stand solo always relaying to my mom.... huhuhu... swear i dont skip eating bananas and other good source of potassium..

[legoman14000]

This is exactly what i am going through!! i was diagnosed a few days ago and i am only 15, This video is incredibly accurate and to know there are other people out there that are going through the same thing i am! and i believe if you dont know what this disorder is you need to see this video

[chaletonpiste]

Heartfelt thanks for the video.

[squintdrummerjosh]

Well this is the FIRST time in my life I've seen someone else make the same movements I've made so many times before, when paralyzed. So cool! (in a way)

[sandrus43]

Thanks for this video! I am so grateful to the PPA for what it has done for me since 2000 when I found out I wasn't alone. I am still working due to better treatment options I have learned from the Listserve and the conferences I was able to attend. Keep up the good work!

[anaearp]

Excellent video, Jake! 

[HG1Z]

Thank you so much for getting this information out there! This is an excellent video ! It is because of efforts like this that my children will have a better future! I am so grateful to all of you!

[ugottafriend4life]

Every single person who does not know or understand what is wrong with me needs to watch this. I am Normokalemic in the Hypo category, meaning that my K does not have to drop below normal levels for me to have severe muscle paralysis. It can drop a mere tenth of a point and put me in bed. It is extremely misunderstood and people need to listen and learn. I desperately need advocacy in getting the treatment that I need to improve as there are no docs in my region who know how to deal with this.

[audiopilotfopc]

Phenominal! 

Thank you for making this happen!