Is there a duplication on chromosome 22.33 per chance? I have hEDS and PP plus a heap of other challenges. I was dx in 1997. Thank you for helping educate folks about this. :)

To all people like me who has experienced or experiencing this. Keep on fighting! I know it is hard but you'll recover. In my case, the main caused was my abnormal thyroid hormones (hyperthyroidism). If it keeps in getting worst try drinking natural coconut water on every attack. Yea it has sugar but it also has high potassium! It works for me like magic.

Hey doc! My mother is suffering from this periodic Paralysis....she can't move a particular body limb...if one night it's one leg then the other night it's her hand ... we've visited multiple doctors according to them she's completely fine....what can i do to cure her...?? Please help me!

I thought I was crazy. 😭

Hello. I got this answer from "Ask the Experts" today... Hi, Here is your reply from Dr. Cannon, Let me know if there is anything else I can help with. ____ Dear Amir, Including your son, I know of only 4 families with CACNA1S missense mutations at p.Arg1242. Linda Feld (former president of the periodic paralysis association) has p.Arg1242Gly. She had episodic weakness as a child and this has progressed to permanent muscle weakness in adulthood. As you may know from her PPA videos, Linda has been wheelchair dependent for many years and now has myopathic weakness of her arms and hands as well.

Hi. Thanks so much for sharing. Your PP episodes and video are the closest I've found to what I experience. I was clinically diagnosed hypo 10 years ago, but at that time only had the full body limpness/Paralysis but since then have also started having where my whole body goes stiff episodes and also seizure like episodes as well. And I am told I'm atypical but doctors can't figure out why I'm having the seizure like, and some don't believe it's PP.... The hardest part is the last six years I've been in a state of weakness that has mostly kept me homebound and when I have an episode it takes months to recover. So trying to figure out how to get stronger is what we can't figure out. I do take potassium 20meq 3 times a day, and started acetazolamide, which my full body episodes happen less, but I still can't seem to get stronger and end up in bed if I do regular things and use an electric wheelchair on my good days to go out. Hopeful that this new info and research will help find more ways to help everyone in the near future. ❤️

Thank you for this, I’m one of these 3-4000 :/

I have this condition since I was 16 and now I'm 22 and I feel like it's getting worse as I get older.

Of-f***ing-course Mayo diagnosed it as psychogenic 🙄🙄🙄

Sent my heart racing threw up to weak to get back on bed head bleed took two hrs to get back on bed I'm always throwing up next blood test they had me emergency

I fell out of bed bashed my headlay on floor for two hrs managed to pull cover off bed

Role of acetazolamide in prophylaxis of hypokalemic periodic paralysis

What about novel atp1A2 mutation in hypokalemic periodic paralysis professor, Greetings from Dr Adithya knv md medicine Chennai India

A little baking soda in lots of water has helped prevent acute muscle stiffness/spasms for me, too! (Patient/host with HyperKPP mentioned this at around 45:03?)

Well, later it turned out that she actually has the very opposite of Hypo: she has Hyperkalemic periodic paralysis... It was close but very wrong to be treated with potassium though. :-(

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?

Id like to see cataplexy vs Hypokalemic periodic paralysis

Thank you for sharing, I am looking for answers on this

I am having this issue now seeking diagnosis, can’t sleep anymore due to it

Thank you for sharing

I do think this a possibility for me thank you

I had this last week and I was really scared. I thought it was high uric but it comes out I have low potassium. You can't walk or even stand. I feel muscle pain.

i had HPP also,doctor said its my lifetime condition ,i took kalium durule evryday

I didn’t know a whole association exist on our condition

Well told by all. Thank you for piecing together a story so even nonscientists can follow the patterns.

But go and educate them- they need it. ;-)

ha ha I bet it was Jakob levitt's video- that is exactly how I found out too- My husband and just watched and cried- finally found it. What your story does not mention is the label of crazy most of us get- for years- I have read up to 95% of PP patients get a psychiatric diagnose before finding out the have PP, yet somehow you avoided that. Nice to hear.

Thank you!!!

Recently i was diagnosed pp. I wonder why some ppl like me could be effected senstively by mere change of potassium level.

Its real....my son has it.

I was diagnosed with hypo PP last year, I’m still learning. Thank you for all you do.

Here are my own titles and sections that I feel are helpful: 00:00 Opening/Monica’s Journey 10:13 Faking it/Attention Seeking 11:34 Diagnosis Journey 13:29 Paul’s Story 14:55 Cienna’s Story 15:47 Monica’s Family Connections: Siblings, children and niece 19:53 Dr. Stephen Cannon: Periodic Paralysis Overview 22:26 Dr. Stephen Cannon: Periodic Paralysis Types & Genetics 32:12 Monica’s Story Continues (faking it & unpredictability; Dating & Marriage) 40:46 Dr. Stephen Cannon: New Information in Monica’s genetic testing 47:00 Difficulty in diagnosis 57:24 Periodic Paralysis Conference: Presenting, Connecting & learning together

Thank you for this, so much is familiar… this is emotional.

I can appreciate that this is not easy to diagnose, but I have a really hard time accepting doctors who make matters even worse by theorizing that the symptoms are psychosomatic/ you're faking / looking for attention. We need to CURE THE DOCTORS of this detrimental line of thought. It affects more than just periodic paralysis patients. Doctors seem to be trained to essentially "give up" if they can't find an answer and the default "psychological" diagnosis becomes more harmful than helpful.

The video referenced often is "I woke up paralyzed..." kzbin.info/www/bejne/Zp_Xfaljmc6sedEsi=MnUy7C6iXnuMBK23

please share link to the paper on chloride mutation and the names of specific sodium and chloride mutations involved. many thanks,

I appreciate you sharing your story. It was nice to hear that your horse is sensitive to you as well. This is also my story... I was diagnosed with HypoKPP thirty years after I began to notice symptoms. It has been terrifying being around medical professionals who think it's psychological. It still is really. Many years ago when this was showing up more and more it became so severe that I was hospitalized for a week and then my breathing was stopping my diaphragm was not lifting. I was paralyzed fully alert in my mind and I thought I was going to die because I couldn't make my lungs take in air. That was the most extreme it became. It was two decades until I was diagnosed after that point. Usually the paralysis will last for around five hours, my breathing does shallow right down, and the seizing will be active for up to thirty minutes give or take depending on the severity. After several hours once the paralysis backs off then I slowly start to get movement back. I will be like a sloth afterwards and it takes a couple days to get my full strength back. I found that exercise would take me down for days, during my period time was a big trigger like clockwork. If my energy was blown out from activity or over stimulation even socially I became depleted quickly. If I laid down and stopped doing anything, before it escalated into a seizure, I could bypass an episode most of the time. My diagnosis came by fluke when I was at a training program where I met a young and very smart doctor who knew instantly what I had, after I explained all the triggers. Potassium chloride was the solution to keep me from going into an episode. It worked, but not every time. I had to take it before it escalated otherwise I ended up going through the whole process of seizing and paralysis for many hours. I did all my own research that led me to dietary solutions to give my body the best support long before I had a diagnosis. This is a very important part to understand. I discovered sugar, caffeine, carbohydrates, would take my system down fast. In recent years I discovered I would get severe vertigo that I discovered was triggered by salt. The vertigo was frightening and would last up to fourteen hours of pure hell! So now I use NO SALT, which interestingly is made with potassium chloride. At one point I was so sensitive I couldn't have one flick of salt in my diet otherwise it would trigger vertigo. Now, I am very careful and still avoid salt, bug I can tolerate a very small amount (only Celtic or Himalayan). I can only have maybe not more than 200mg of salt before my ears start ringing and giving me notice that vertigo is on the edge. I keep watch over my diet. Since I have been careful about salt I've been able to avoid vertigo. If I cheat a little... I can feel it coming back, so I know salt is the trigger. I don't know if this is part of anything to do with HYPP. Doctors here in Canada are so limited in their knowledge about HYPP. My diet now is a high nutrition diet... I don't count calories at all I count nutrients. If it's not real food I avoid it because it doesn't give my cells a fighting chance. Finally, after getting a clue of what this was, I went to a neuromuscular specialist and he did and EXTENSIVE nerve conduction test. The first nerve conduction test only triggered some muscle jerking but didn't reveal much more. Twenty years earlier (before diagnosis) I had taken the orange drink glucose test to check for diabetes, but within 5-10 minutes I started going into a seizure. They didn't continue the blood test. There they would have seen my potassium drop. However, over the years of being in the ER (after diagnosis) when they've taken blood most often they never saw the potassium drop, which made it very frustrating to explain this to the doctors because they are not experts in this area. The blood work only came a couple hours after the onset of the episode, so it was too late to see any changes because I was slowly coming out of it by that point. I have zero sugar... I can tolerate pure honey in my tea or if I make a super healthy desert I'll use honey only. I've collapsed so many times I now have a service dog. I avoid leaving the house by myself and don't venture too far out without someone being with me who can speak for me when I'm paralyzed. It's a frightening position to be in when the medical society has no clue what this is. I park in disabled and I get glares because I look fine otherwise but I need it in case I feel I need to lay down quickly. I'll just lay in the vehicle until my strength comes back. Mostly I don't leave the house but when I do it's when Im having a good day and I feel stronger. There's much I've learned about diet, triggers, and what to avoid in order to have a functional life. Life changed drastically and over the years I learned how to cope, adjust, and keep safe while still living the best life I can.

Thank you for putting this long form video together ❤. It would be great to have the links to the shorter segments and chapter delineation of the segments in the description. Wonderful video.

I had this and i feared for my life. I cried so much.

Thank you just came into this valuable information

What about ahus . Ahus and vus are same ?

I believe someone in my family may be experiencing this. I’ve been scouring the internet trying to find more info. Do you know the incidence of this phenomenon? Has this become more common than previous years? Is this something that would be rare for a very active 38 YO super athletic man to just start having these episodes? I’m really desperate for some answers and hope you can help me. Thank you ❤️🙏🏻

මටත් තියෙනවා 😢

I thank Dr cannon for explaining the role of potassium in periodic paralysis. I feel higher intake of carbohydrate to ward off weakness may bring in early onset of diabetes. There may be a relationship between glucose metabolism and weakness. Balancing PP and diabetes are a real problem.

Emg could show if a person has PPA? thanks

This is an incredible study! Thank you to all of the researchers and providers that are working to improve diagnosis and treatment of PP and to the PPA for sharing this! If I’m understanding correctly, the implication is that these muscle velocity recovery cycles (MVRC’s) could help remove some of the current obstacles faced in using the long exercise test such as timing of the test and dependence on patient movement as well as help diagnose specific forms of PP, which is really incredible. As a patient, I would be interested in participating in any US-based studies if it would be helpful. I have a KCNJ2 variant that is currently considered benign by labs through which I received genetic testing. The variant has some evidence in Varsome as being possibly pathogenic. Prior to finding the KCNJ2 variant, I underwent the long exercise test which returned normal results, however I never felt confident about it due to staff’s comments about their need for a cheat sheet to perform the test (can’t blame them that it’s so rarely performed) and because the clinical notes (in my limited understanding) seemed to differ from the Fournier EMG protocol. Based on other patient’s stories, I seem to experience less severe muscle weakness than those with hypokalemic or hyperkalemic periodic paralysis, which is consistent with current finding on Andersen-Tawil’s Syndrome, so maybe the lack of severity was a factor in my testing? Hypothetically, could MVRC’s be sensitive enough to pick up on weakness for Andersen-Tawil Syndrome patients that do not have a firm genetic diagnosis?

There is talk about the supposed beneficial action of the carbonic anhydrase inhibitor on SCN4A mutations... but what about when it worsens with the use of Acetazolamide?

Important study!

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!

I have this it's terrifying but now I know what's happening to me