Thanks, been dealing with this a long time. Went through three neurologists before I found one that knew what he was talking about he is the one who diagnosed me over 30 years ago I am 52 now so I have had a lifetime dealing with the aggravation the pain and sometimes even the disappointment of not being able to do the things I would love to have done.
Keith, we are happy to hear that you have found a good doctor. It can be very challenging to find one that is knowledgeable about PP. We will be releasing new episodes in mid August and we hope that some of the content will be able to help you with managing your PP better and with your pain and limits.
@@keithharmon2056 at least you had been diagnosed that long ago! Be grateful!! It took 30 years of agony and frustration to get my diagnosis as well as 9 neurologists. Finally my own family Dr had to diagnose me. It’s been almost 2 years I’ve had my diagnosis and I’m barely learning how to manage my disease etc. I’m 55. And have lost much of my mobility. Be very grateful for your early diagnosis.
@@cherriceann11 I am grateful. I have the best family doc ( for over 35 years) and the best neurologist . I am sorry you have this two. I know it does not get easier. I am 53. Also this is the best website I have found, these people are very understanding and sensitive to your needs. God bless. Hang in there.
Easy to understand and to the point. The leg issue is a big thing with this disorder for sure. It's getting worse now at 68 years old. I wonder how much worse this will get as I age.
Thank you so much for watching and your comment. Visit our webinar page on our website and view the 2020 webinar. Near the end of the webinar Dr. Cannon touches on permanent muscle weakness. Be sure to subscribe so you will not miss our next episode.
I have been unable to get a diagnosis of what is wrong with me, but yet again today had all the symptoms described with my intermittent weakness. Could barely walk & finally tried eating sugars & then half hour later was able to get up out of the chair. It comes and goes. I have to work my life around the weakness episodes. Try to limit potassium, but tried some new food and crashed.
Another great and informative video! Sometimes I think I am crazy when these things happen, but hearing Dr. Cannon state that waking up in the morning unable to move and recovering completely are both strong indicators of PP is helpful. Question: Is there a list notes for caregivers that helps them understand how to better help their loved one during episodes? What to do, when to seek emergency care, etc? Thanks!
We are so happy that you are enjoying the videos. We do not have a list for caregivers because so many with PP have different symptoms, needs and mobility. We highly suggest that all PP patients communicate, prior to an episode, with their caregivers what they may or may not need during an episode. I personally created and printed a list of symptoms and needs associated with those symptoms for my family so that if I am not able to communicate my needs they have an understanding of what I need from them. When to seek emergency care is a very personal case by case decision that each patient should establish with their doctor. My doctor and I have a guideline that if my symptoms are effecting my breathing or heart, that I seek emergency care. If you are not under the care of a doctor that treats PP we highly suggest that you check out our our website at periodicparalysis.org/find-a-doctor-disclaimer/ and push the Locate a PP Specialist Near You tab. I hope this information helps you. Thank you.
Hi! I decided to rewatch this again for like the tenth time lol. Now that it’s been about two years since my diagnosis, I am seeing something interesting and wanted to ask a question. Question- How rare is it if I’m finding myself to be the only person who has Hypokalemic Periodic Paralysis? Even my children don’t seem to have it. Thank God!! 🙏🏼 They are almost all in their 30’s now and I now have six grandchildren as well. So far I’m the only one who has obvious symptoms of periodic paralysis disease.
Thank you for your question. Please submit all questions to Ask the Experts on our website. Here is the link. periodicparalysis.org/ask-the-experts-disclaimer/
I am from Cimahi, Indonesia. I was diagnosed with Periodic Paralysis Normo Kalemia in 1998 until December 2021. In 2022, January I was sick, paralyses and my eyeslid dropped. My family brought me to Hasan Sadikin Hospital in Bandung, Indonesia. I was diagnosed with Myasthenia Gravis. Can a person suffer from different Neurological diseases? NormoPP and MG? Thank you very much.
Tri, unfortunately we cannot answer your medical question on this platform. Please submit your question to this link on our webiste. periodicparalysis.org/ask-the-experts-disclaimer/ Thank you.
Unfortunately, all medical questions must go through the Ask an Expert link on our website. Here is the link - periodicparalysis.org/ask-the-experts-disclaimer/ We look forward to hearing from you.
I had a severe attack today lasted nearly 16 hours. Even now typing this I still haven't regained full strength In the early hours of the day I couldn't even close my hands everything was so weak. I hadn't heard of PP before but I knew that electrolyte issues can cause issue with muscular contraction so I ordeded two electrolit drinks (487mg) of potassium each and then also took 300mg through pills. Eventually got seen at the er and they did blood work but I was at the low end range of normal 3.5mg/mmol I had two medium pizzas and a bunch of cookies and sugary drinks the night before (I had a weed edible) This isn't the first time I've had this happen either although this is the most severe time. My question is even after blood potassium levels return to normal levels is it normal for it to take time to regain full strength
Yes it should be possible for you to be recovering and your blood K+ levels to be normal, but your still not at full strength because it's taking a little while longer for the skeletal muscles to fully correct the imbalance (assuming your hypo). But, this should not last for very long and you should be in the process of recovering from the episode. www.ncbi.nlm.nih.gov/pmc/articles/PMC4963920/#B38-nutrients-08-00444 section 4 talks about different organs and tissue groups absorb K+ at slightly different rates.
That information can be found on our website. Here is the link. periodicparalysis.org/hypopp-and-hyperpp-diet/ Each patient is different and that is why we recommend doing a food log. High carbs, such as a chocolate bar can help reverse an episode of HYPER PP. If you have any further questions, please contact us thorough the Ask the Experts on our website.
This was far less informative than I was hoping it would be. I have hypoKPP. So the answers to those questions from people wondering if they do was a bit of a disappointment.
Thank you for watching and your comment. We love to have feedback on our episodes. Today we tried to answer some of the most common questions we get about PP. Have you visited our website and watched the webinar from 2020? The last hour and a half of Dr. Cannon’s portion he goes into detail on PP. you may find the information you are looking for in that webinar. We also invite you to send in a question that you would like to have answered through any of our platforms. I hope I have been able to provide you some information to hopefully help you get the answers you are seeking. We hope that you will subscribe so that you can stay turned for more episodes.
![ประสบการณ์ จ้าง Developer ที่ผมจะไม่มีวันลืม [ภาค2]](http://i.ytimg.com/vi/pZbsSDRrmXA/mqdefault.jpg)
Thanks, been dealing with this a long time. Went through three neurologists before I found one that knew what he was talking about he is the one who diagnosed me over 30 years ago I am 52 now so I have had a lifetime dealing with the aggravation the pain and sometimes even the disappointment of not being able to do the things I would love to have done.
Keith, we are happy to hear that you have found a good doctor. It can be very challenging to find one that is knowledgeable about PP. We will be releasing new episodes in mid August and we hope that some of the content will be able to help you with managing your PP better and with your pain and limits.
@@PeriodicParalysisAssociation thank you, can't wait to see what you have to offer, and help .
@@keithharmon2056 at least you had been diagnosed that long ago! Be grateful!! It took 30 years of agony and frustration to get my diagnosis as well as 9 neurologists. Finally my own family Dr had to diagnose me. It’s been almost 2 years I’ve had my diagnosis and I’m barely learning how to manage my disease etc. I’m 55. And have lost much of my mobility. Be very grateful for your early diagnosis.
@@cherriceann11 I am grateful. I have the best family doc ( for over 35 years) and the best neurologist . I am sorry you have this two. I know it does not get easier. I am 53. Also this is the best website I have found, these people are very understanding and sensitive to your needs. God bless. Hang in there.
well done ! Like that the answers were specific. Thank you
Thank you for watching and your comment. We hope this information is helpful. Be sure to subscribe so you can stay tuned in for more episodes.
Easy to understand and to the point. The leg issue is a big thing with this disorder for sure. It's getting worse now at 68 years old. I wonder how much worse this will get as I age.
Thank you so much for watching and your comment. Visit our webinar page on our website and view the 2020 webinar. Near the end of the webinar Dr. Cannon touches on permanent muscle weakness. Be sure to subscribe so you will not miss our next episode.
I have been unable to get a diagnosis of what is wrong with me, but yet again today had all the symptoms described with my intermittent weakness. Could barely walk & finally tried eating sugars & then half hour later was able to get up out of the chair. It comes and goes. I have to work my life around the weakness episodes. Try to limit potassium, but tried some new food and crashed.
Another great and informative video! Sometimes I think I am crazy when these things happen, but hearing Dr. Cannon state that waking up in the morning unable to move and recovering completely are both strong indicators of PP is helpful. Question: Is there a list notes for caregivers that helps them understand how to better help their loved one during episodes? What to do, when to seek emergency care, etc? Thanks!
We are so happy that you are enjoying the videos. We do not have a list for caregivers because so many with PP have different symptoms, needs and mobility. We highly suggest that all PP patients communicate, prior to an episode, with their caregivers what they may or may not need during an episode. I personally created and printed a list of symptoms and needs associated with those symptoms for my family so that if I am not able to communicate my needs they have an understanding of what I need from them. When to seek emergency care is a very personal case by case decision that each patient should establish with their doctor. My doctor and I have a guideline that if my symptoms are effecting my breathing or heart, that I seek emergency care. If you are not under the care of a doctor that treats PP we highly suggest that you check out our our website at periodicparalysis.org/find-a-doctor-disclaimer/ and push the Locate a PP Specialist Near You tab. I hope this information helps you. Thank you.
Hi! I decided to rewatch this again for like the tenth time lol. Now that it’s been about two years since my diagnosis, I am seeing something interesting and wanted to ask a question.
Question- How rare is it if I’m finding myself to be the only person who has Hypokalemic Periodic Paralysis? Even my children don’t seem to have it. Thank God!! 🙏🏼 They are almost all in their 30’s now and I now have six grandchildren as well. So far I’m the only one who has obvious symptoms of periodic paralysis disease.
Thank you for your question. Please submit all questions to Ask the Experts on our website. Here is the link. periodicparalysis.org/ask-the-experts-disclaimer/
i had HPP also,doctor said its my lifetime condition ,i took kalium durule evryday
I am from Cimahi, Indonesia. I was diagnosed with Periodic Paralysis Normo Kalemia in 1998 until December 2021. In 2022, January I was sick, paralyses and my eyeslid dropped. My family brought me to Hasan Sadikin Hospital in Bandung, Indonesia. I was diagnosed with Myasthenia Gravis. Can a person suffer from different Neurological diseases? NormoPP and MG? Thank you very much.
Tri, unfortunately we cannot answer your medical question on this platform. Please submit your question to this link on our webiste. periodicparalysis.org/ask-the-experts-disclaimer/
Thank you.
I am suffering from andreson tawil syndrome can pleas tell me the what treatment need to take
Unfortunately, all medical questions must go through the Ask an Expert link on our website. Here is the link - periodicparalysis.org/ask-the-experts-disclaimer/
We look forward to hearing from you.
Sir My Two Sons Are Effected Paramyotonia Congeniita
I had a severe attack today lasted nearly 16 hours. Even now typing this I still haven't regained full strength In the early hours of the day I couldn't even close my hands everything was so weak. I hadn't heard of PP before but I knew that electrolyte issues can cause issue with muscular contraction so I ordeded two electrolit drinks (487mg) of potassium each and then also took 300mg through pills. Eventually got seen at the er and they did blood work but I was at the low end range of normal 3.5mg/mmol
I had two medium pizzas and a bunch of cookies and sugary drinks the night before (I had a weed edible)
This isn't the first time I've had this happen either although this is the most severe time. My question is even after blood potassium levels return to normal levels is it normal for it to take time to regain full strength
Yes it should be possible for you to be recovering and your blood K+ levels to be normal, but your still not at full strength because it's taking a little while longer for the skeletal muscles to fully correct the imbalance (assuming your hypo). But, this should not last for very long and you should be in the process of recovering from the episode.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4963920/#B38-nutrients-08-00444
section 4 talks about different organs and tissue groups absorb K+ at slightly different rates.
Carnivore and keto is the way out*
Healing the Gut that we can absorb nutrition is necessary
We highly recommend a food log to help patients get a better understanding of which foods work for them.
@@PeriodicParalysisAssociation we need to go to the cause, so lovering insulin, inflamation..
All the best
Patients with Hyper PP benefit from carbs in their diet, we do not recommend a low carb diet for Hyper PP patients.
@@PeriodicParalysisAssociation how many carbs do you recomended, and what kind of them?
That information can be found on our website. Here is the link. periodicparalysis.org/hypopp-and-hyperpp-diet/
Each patient is different and that is why we recommend doing a food log. High carbs, such as a chocolate bar can help reverse an episode of HYPER PP. If you have any further questions, please contact us thorough the Ask the Experts on our website.
This was far less informative than I was hoping it would be. I have hypoKPP. So the answers to those questions from people wondering if they do was a bit of a disappointment.
Thank you for watching and your comment. We love to have feedback on our episodes. Today we tried to answer some of the most common questions we get about PP. Have you visited our website and watched the webinar from 2020? The last hour and a half of Dr. Cannon’s portion he goes into detail on PP. you may find the information you are looking for in that webinar. We also invite you to send in a question that you would like to have answered through any of our platforms. I hope I have been able to provide you some information to hopefully help you get the answers you are seeking. We hope that you will subscribe so that you can stay turned for more episodes.
Know the feeling. I have it two. I'm 52, been dealing with this a long time. Take care of yourself brother.
I have had Becker’s myotonia congenita the myotonia is triggered by panic attacks and potassium I’m 60 years of age and been effected all my life
Thank you for sharing. Knowing your triggers for your condition is very helpful for controlling your symptoms.