I have Hypokalemic Paralysis. I was diagnosed in 2015. I’d love to have a chance to tell my story about finding the PPA and learning about the different degrees of attacks. Family and friends need to know this is real and it has a real affect on our lives.

@PeriodicParalysisAssociation

3 жыл бұрын

We would love to hear more about your journey and diagnosis of PP. You can contact us through our website. Thank you for watching our videos and sharing your comments with us.

I was just 5 yrs old when diagnosed and now 35 years later hearing and seeing other people with fhpp is bizarre I will say, as I truly thought that my mama, brother, and myself were the only ones who had this extremely rare illness and with no family history to my mama. It has been so challenging and very hard to explain to people what fhpp is and how serious it can be and now, to hear so many people struggle as I do is honestly refreshing cause my brother and I are not the only ones and we are not alone!

@PeriodicParalysisAssociation

6 ай бұрын

I'm very glad that you were able to find us. This is heartwarming to hear. One of the reasons we at the PPA try and hold the conferences is for this exact reason, for people to meet other patients with periodic paralysis, maybe for the first time, and get to share stories about living with the condition and how they manage it. Please don't hesitate to reach out to us.

im also a patient hypokalemic periodic paralysis,its been 10 years now

@PeriodicParalysisAssociation

Жыл бұрын

Margie, Nice to meet you. We hope you find these episodes helpful. Let us know if we can answer any questions or provide some guidance.

I'm in Calgary Alberta, I have Hypokalemia they say. I get attacks and become paralyzed after high stress or after eating high carbs. It can vary depending upon how bad the attack is. It has lasted 3 days once, going from a painful attack right up to hospitalization. I have been genetically tested but there's no markers so I have no official diagnosis.

@PeriodicParalysisAssociation

Жыл бұрын

Jason, we are sorry to hear that you are struggling with symptoms. Avoiding triggers is very important in controlling symptoms. You may want to avoid carbs in order to avoid symptoms from them. That would also include drinks that have sugar. You may want to have another genetic test if it has been more than 5 years, new genes have been identified.

@leroyavila3088

Жыл бұрын

I have beckers myotonia congenita, it’s one of the 3 myotonias, autosomal recessive,dominant and recessive,like the fainting goats 🐐,I shure have a lot of generations from the Scottish side of the family that are from Canada 🇨🇦 surnames Allen and Maxwell, I drove through the Mackenzie territory, at least I believe so the restaurant I ate at referred to me as hey a, it was a Scottish restaurant that was back in 2009

@jasonvoorhees8545

Жыл бұрын

@@leroyavila3088 Is there a connection between Scottish and the disease?

I have hyperkalemic periodic paralysis I was diagnosed when I was very young and I wasn’t able to understand why I couldn’t do everything else that other kids could. I’m currently 14 and still have bad symptoms but it’s nice to have people to speak about it with

@PeriodicParalysisAssociation

Жыл бұрын

Thank you for sharing your story and we are sorry to hear that you are struggling with your symptoms. Have you visited our website? You may find some helpful information that might be able to help you manage your symptoms. Here is the link - periodicparalysis.org/

I get paralysis attacks Dr's in UK don't know what it is and watch it in hospitals. They put it down to fnd few other things when it could be more. They think I'm imagining it maybe. I don't know but I'm not. I'm bedridden with attacks. It's very scary. I just pray I come out of them . They last hours then go into another quickly.

@PeriodicParalysisAssociation

Жыл бұрын

We are sorry to hear that you have been struggling with your health. Food can be a big trigger for many people with Periodic Paralysis. A food log can be very helpful in understanding which foods are causing symptoms. Sugar, carbohydrates and salt is a trigger for many with Hypokalemic Periodic Paralysis. A genetic test may be helpful in confirming a diagnosis. You may want to ask your doctor about that.

@corneely39

11 ай бұрын

do you find the more stressed you are during an episode the longer it takes to come out of it?

Iam 38 years old and it just started a couple weeks felt I couldn't move the right side of my body arms and legs for about 5mins then normal again I looked at what I ate the night before it was lamb....should I get tests done?

If I need to move normally the next day I simply starve myself the day before... I know this isn't sustainable or healthy but I was wondering if anyone else does that. Of course my main trigger is from eating but there are other factors. I can never make full heads or tails out of how they combine but not eating is the best way to avoid a crash.

@PeriodicParalysisAssociation

9 ай бұрын

Thank you for sharing what works for you. We recognize that each patient is an individual and highly recommend that all patients contact one of our medical experts before adopting such an aggressive approach to managing their symptoms. Those experts can be reached through our website. periodicparalysis.org/ask-the-experts-disclaimer/

I live in the phillipines, I have hypokalemic periodic paralysis just this 2023 march. they same to doctor happening to her😢😢😢😢i wanted to try drink potassium chloride if its ok? Im taking medicine for thyroid prescribe by doctor.

@PeriodicParalysisAssociation

Жыл бұрын

Jaymar, we are sorry to hear that you are struggling. We would love to answer your question regarding potassium chloride, all medical questions must be submitted through our website. Here is a link periodicparalysis.org/ask-the-experts-disclaimer/

is ppa the same as those with cataplexy whichnis triggered through emotions as well as getting paralysis when going to sleep as well as waking?

@PeriodicParalysisAssociation

11 ай бұрын

That question and many others can be answered on our website. Here is the link periodicparalysis.org/ Periodic Paralysis is a channelopathy that is caused by a genetic mutation that effects the function of specific channels in muscle.

@corneely39

11 ай бұрын

@PeriodicParalysisAssociation thank you for replying, i did look & couldnt see anything about this but will look again. although temporary cataplexy can lead to total paralysis, my heart appears to also beat slower & breathing becomes difficult especially if on my back.

@PeriodicParalysisAssociation

11 ай бұрын

On our website we list common triggers of periodic Paralysis. If you would like more information regarding your specific question, we would recommend you submit your question to one of our experts, here is the link. periodicparalysis.org/ask-the-experts-disclaimer/ They would be happy to assist you.

@corneely39

10 ай бұрын

@@PeriodicParalysisAssociation thank you

When i go to hospital and waiting to test me, ive just fall in the ground cause of low potassium only 2.5, said by the doctor and i have tyroid problem also😢😢😢

@PeriodicParalysisAssociation

Жыл бұрын

Jaymar, thank you for sharing your story. We hope you find these videos helpful.

@corneely39

11 ай бұрын

a good quality clean (no added extras) sea moss will improve thyroid issues & if you eat foods that contain potassium your levels should improve, over the counter & prescribed supplements don't generally contain all the molecules found naturally

@corneely39

11 ай бұрын

iodine deficiency causes thyroid problems