Thank you so much for your help explaining the difficulties in identifying markers for shifts in electrolytes. What can people who swing both high and low across multiple electrolytes do to improve quality of life?
Thank you for your question. Unfortunately, we can not answer medical questions on this platform. You can ask this question on our website through Ask an Expert, here is a link periodicparalysis.org/ask-the-experts-disclaimer/ . Make sure to provide if you are clinically or genetically diagnosed with Primary Periodic Paralysis. Also, you mind it beneficial to include why you and/or your doctor believes your blood potassium swings from high to low.
Hi. Shooting a long shot here. 23 years old. For a little over a year, i have suffered from 4 attack, where i suddenly get numb/paralyzed on my right side of my body. It goes from 0-100 in around 10 seconds. With my first attack, my symptoms lasts 3,5 months. Since then, all of my other attacks have lasted for around 2-4 weeks. With my attacks come numbness/paralasis, trouble speaking/mumbling, nausea and extreme fatique.. When i stand up for 1-2 minutes, my right arm will then turn blue, stiff and get white spots. No doctor seems to know what to do.. It is affecting my life, and im scared every day.. - from Josephine From Denmark
Josephine, we are sorry to hear that you are struggling with your health and answers. Unfortunately, we cannot provide medical information on this social media venue. Please use this link to submit a question to one of our medical experts. periodicparalysis.org/ask-the-experts-disclaimer/
I hoped to come to the convention next week, but I am unable. Is it too late to register for online viewing? If it’s not too late how do I attend online? Thanks!
Hi there, Since 2019 or earlier I have had some kind on and off weakness some horrible PP attacks . A very chronic tiredness disorder. But funny enough. The pottussim supplements helps my tired spells moods. Aches. My cardiologist looked at my trend bloods to see. I have drops in my pottussim. My worst attack pottussim drop to 3.1 needed slow iv pottussim . Since then I keep getting mild attacks , my ex cardiologist told me my levels should be above 4. With heart related issues.? Currently on 2 slow k , spirlatone. Why is this condition not very reckonised in Australia. What is the genetic test for this. I believe my mum could have this too. She was diagnosed with fibromyalgia, connective tissue disease . Many yrs ago told recently she is losing all her muscle tone in her legs. Your right about Drs saying they are in normal range ect.
The PPA is doing all we can to spread awareness of this rare disease. Unfortunately, there are many countries that do not recognize PPP. Our hope is that working together in spreading awareness and raising funds, will change that one day. There is a genetic panel test for PPP and we recommend that panel with any other genetic test your doctor recommends.
I was dxd with Normokpp. I dont go out of range, that I have caught, during episodes. I have both stiff and languid episodes. Are there any similar diseases to PPP that could be causing my symptoms that we know of? Since I dont fall in the box and the only gene connection I have is RYR1 I've been encouraged to consider other dxds.
Melissa, thank you for your question. This question would need to be asked through our Ask and Expert on on website. Here is a link periodicparalysis.org/ask-the-experts-disclaimer/ . We do not answer medical questions through this platform. Thank you for understanding.
Does anyone have SCN4A variant by chance? I guess I have periodic paralysis and am new to this. Is there a Facebook group who has channelopathies? Thank you for the video. Can someone have symptoms for both hypo and hyper? I have paralysis occasionally but also dystonic seizures or myoclonic.
Tkimber, there are many different SCN4A Variants, not all cause PP. Here is a link for you to input your specific SCN4A variant that will show you what is currently being reported/researched for that specific one. www.ncbi.nlm.nih.gov/clinvar/ It is very important that you stay opened minded when it comes to your diagnosis. The correct diagnosis will provide you with the correct treatment. We hope you find this information helpful.
@@PeriodicParalysisAssociation thank you so much. I was diagnosed by a geneticist who specializes in channelopathies. With my symptoms and genetic findings periodic paralysis was his diagnosis also. I read a lot of medical articles to stay on top of my other issues but this one is over my head. I’m looking for others to see what is helping them. Hoping to learn more. Thanks again.
Thank you so much for your help explaining the difficulties in identifying markers for shifts in electrolytes.
What can people who swing both high and low across multiple electrolytes do to improve quality of life?
Thank you for your question. Unfortunately, we can not answer medical questions on this platform. You can ask this question on our website through Ask an Expert, here is a link periodicparalysis.org/ask-the-experts-disclaimer/ . Make sure to provide if you are clinically or genetically diagnosed with Primary Periodic Paralysis. Also, you mind it beneficial to include why you and/or your doctor believes your blood potassium swings from high to low.
excellent and useful explanation
Glad you liked it!
Great video! Thank you
Thank you for watching.
Hi.
Shooting a long shot here. 23 years old. For a little over a year, i have suffered from 4 attack, where i suddenly get numb/paralyzed on my right side of my body. It goes from 0-100 in around 10 seconds. With my first attack, my symptoms lasts 3,5 months. Since then, all of my other attacks have lasted for around 2-4 weeks. With my attacks come numbness/paralasis, trouble speaking/mumbling, nausea and extreme fatique.. When i stand up for 1-2 minutes, my right arm will then turn blue, stiff and get white spots. No doctor seems to know what to do..
It is affecting my life, and im scared every day..
- from Josephine From Denmark
Josephine, we are sorry to hear that you are struggling with your health and answers. Unfortunately, we cannot provide medical information on this social media venue. Please use this link to submit a question to one of our medical experts. periodicparalysis.org/ask-the-experts-disclaimer/
I hoped to come to the convention next week, but I am unable. Is it too late to register for online viewing? If it’s not too late how do I attend online? Thanks!
Alisha, it is not too late to register for online attendance. You would go to periodicparalysis.org and register there.
Hi there,
Since 2019 or earlier I have had some kind on and off weakness some horrible PP attacks .
A very chronic tiredness disorder.
But funny enough.
The pottussim supplements helps my tired spells moods. Aches.
My cardiologist looked at my trend bloods to see.
I have drops in my pottussim.
My worst attack pottussim drop to 3.1 needed slow iv pottussim .
Since then I keep getting mild attacks , my ex cardiologist told me my levels should be above 4.
With heart related issues.?
Currently on 2 slow k , spirlatone.
Why is this condition not very reckonised in Australia.
What is the genetic test for this.
I believe my mum could have this too.
She was diagnosed with fibromyalgia, connective tissue disease .
Many yrs ago told recently she is losing all her muscle tone in her legs.
Your right about Drs saying they are in normal range ect.
The PPA is doing all we can to spread awareness of this rare disease. Unfortunately, there are many countries that do not recognize PPP. Our hope is that working together in spreading awareness and raising funds, will change that one day. There is a genetic panel test for PPP and we recommend that panel with any other genetic test your doctor recommends.
I was dxd with Normokpp. I dont go out of range, that I have caught, during episodes. I have both stiff and languid episodes. Are there any similar diseases to PPP that could be causing my symptoms that we know of? Since I dont fall in the box and the only gene connection I have is RYR1 I've been encouraged to consider other dxds.
Melissa, thank you for your question. This question would need to be asked through our Ask and Expert on on website. Here is a link periodicparalysis.org/ask-the-experts-disclaimer/ . We do not answer medical questions through this platform. Thank you for understanding.
Does anyone have SCN4A variant by chance? I guess I have periodic paralysis and am new to this. Is there a Facebook group who has channelopathies? Thank you for the video. Can someone have symptoms for both hypo and hyper? I have paralysis occasionally but also dystonic seizures or myoclonic.
Tkimber, there are many different SCN4A Variants, not all cause PP. Here is a link for you to input your specific SCN4A variant that will show you what is currently being reported/researched for that specific one. www.ncbi.nlm.nih.gov/clinvar/
It is very important that you stay opened minded when it comes to your diagnosis. The correct diagnosis will provide you with the correct treatment. We hope you find this information helpful.
@@PeriodicParalysisAssociation thank you so much. I was diagnosed by a geneticist who specializes in channelopathies. With my symptoms and genetic findings periodic paralysis was his diagnosis also. I read a lot of medical articles to stay on top of my other issues but this one is over my head. I’m looking for others to see what is helping them. Hoping to learn more. Thanks again.