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• 
  @dmwme2 күн бұрын

  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.

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  @Supriyakonwar__5 күн бұрын

  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!

• 
  @shelbycox294826 күн бұрын

  I thought I was crazy. 😭

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  @hagayamir656826 күн бұрын

  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.

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  @TashiaTomlinsonАй бұрын

  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. ❤️

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  @TashiaTomlinsonАй бұрын

  Also, my potassium is always in the normal range, although lower in the normal range, as well when they take it, even when I've been in the hospital when an episode happened and they drew my blood within minutes.

• 
  @roderickaugustАй бұрын

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

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  @bartpanal8828Ай бұрын

  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.

• 
  @shadow_songАй бұрын

  i'm sorry to hear that :/ i have hypoKK too, and mine got suddenly very very much more severe around 2 years ago, i was 21 at the time. it was pure hell. like nothing i'd had before, for more than half a year..i couldn't leave my home, i was paralyzed every day. i had to have ambulance called a couple of times, be hospitalized a few times and once gad to be admitted into an inpatient unit. and guess what, we found no reason for it even after extensive testing. that being said... it also passed as suddenly as it appeared! out of nowhere, for no reason once again, my attacks went back to my normal standard. and i could get back to my old normal. so.. i hope it's the same for you! that you are now in your worst, but passing, stage if worsening! good luck!

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  @xanzobarАй бұрын

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

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  @markczarny70882 ай бұрын

  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

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  @markczarny70882 ай бұрын

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

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  @adithyavikram72 ай бұрын

  Role of acetazolamide in prophylaxis of hypokalemic periodic paralysis

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  @adithyavikram72 ай бұрын

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

• 
  @ASLsoFine2 ай бұрын

  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?)

• 
  @kirgise882 ай бұрын

  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. :-(

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  @heemlal14682 ай бұрын

  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?

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  @savethechildren23 ай бұрын

  Id like to see cataplexy vs Hypokalemic periodic paralysis

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  @BrianSladek3 ай бұрын

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

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  @BrianSladek3 ай бұрын

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

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  @BrianSladek3 ай бұрын

  Thank you for sharing

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  @sunpod67153 ай бұрын

  I do think this a possibility for me thank you

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  @LeonidesAraquin3 ай бұрын

  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.

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  @andrewchong7658Ай бұрын

  try cucumber juice everyday

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  @margieybanez45503 ай бұрын

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

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  @Ohh_zora3 ай бұрын

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

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  @PeriodicParalysisAssociation3 ай бұрын

  Indeed. You can check out our website for more information about us, our mission and more about HKPP: periodicparalysis.org

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  @shawnrisley24043 ай бұрын

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

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  @tammylain77543 ай бұрын

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

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  @tammylain77543 ай бұрын

  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.

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  @tammylain77543 ай бұрын

  Thank you!!!

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  @haminkim19543 ай бұрын

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

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  @sailshane4 ай бұрын

  Its real....my son has it.

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  @stellaancimer85053 ай бұрын

  how he was diagnosed?

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  @bobbypacewicz5683 ай бұрын

  My son has it too It's definitely been a long road and up and down

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  @stellaancimer85053 ай бұрын

  @@bobbypacewicz568 how they diagnose them? Tnx

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  @bobbypacewicz5683 ай бұрын

  @@stellaancimer8505 genetic testing

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  @bobbypacewicz5683 ай бұрын

  Genetic testing

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  @yolandasoto19944 ай бұрын

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

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  @EmilyPloegman4 ай бұрын

  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

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  @wminion38904 ай бұрын

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

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  @stellaancimer85053 ай бұрын

  You also have it? How you get diagnose?

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  @wminion38903 ай бұрын

  ​@@stellaancimer8505 I was Diagnosed by the Dean of Neurology at UCI when I was a teen, but I have no more paperwork and they can find no records that old so I'm currently in the process of being re-diagnosed. One step at a time.

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  @KMx1084 ай бұрын

  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.

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  @stellaancimer85053 ай бұрын

  @KMx108 for me they gave me Fnd diagnose, because ct and gene was normal...but i am totaly disable, having weakness all the time

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  @tinandglass3 ай бұрын

  In the last 10 or so years we've discovered a hormone in muscle tissue (irisin), determined one muscle responsible for chewing was really three, found a new set of salivary glands behind the nose etc, but nope it must be all in our heads!

• 
  @Ohh_zora3 ай бұрын

  For the longest when I was younger me and my mom would beg my pediatrician to give us a referral almost fight (we had prior knowledge to our condition)to see a neurologist specializing in my condition he tried treating me himself with potassium pills which was the worst until finally I got the referral got officially diagnosed it’s really hard when people don’t believe you

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  @stellaancimer85053 ай бұрын

  @@Ohh_zora yes it is hard..how you get diagnose? Because my gene come back normal ..

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  @Ohh_zora3 ай бұрын

  @@stellaancimer8505 hi yes i actually had to go get blood drawn during one of me attacks or episodes it’s embarrassing and hard but it’s really the only way

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  @EmilyPloegman4 ай бұрын

  The video referenced often is "I woke up paralyzed..." kzread.info/dash/bejne/YqKorthmlMzfc9I.htmlsi=MnUy7C6iXnuMBK23

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  @kendrazoa9584 ай бұрын

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

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  @therenaissancewoman20804 ай бұрын

  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.

• 
  @janeshipley69934 ай бұрын

  oh so familiar, renwoman. we’ve had to do so much on our own, while being mistreated by many doctors. thanks so much for writing about the connection between salt and tinnitus/vertigo - i’d not read about that.

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  @stellaancimer85053 ай бұрын

  Can i Ask how you get offical diagnose? Because they gave me Fnd diagnose, because gene come back normal..i am also zero sugar, i imidiatly get paralysis if i consume..i am on carnivore now...do you have any hobbies? Thanks

• 
  @therenaissancewoman20803 ай бұрын

  @@stellaancimer8505 You need to see a neuromuscular doctor. The first test I had was a basic nerve conduction test. That didn't reveal anything. Although, my muscles were beginning to twitch. That neurologist doctor referred me to the neuromuscular doctor. He ordered an extensive nerve conduction test that was an exercise test. It showed my muscles were not responding in recovery as they should have. It wiped me right out. The genetic blood test came back negative. The doctor told me that doesn't mean I don't have it. The extensive nerve conduction test showed it. FINALLY. Ask to your doctor for a referral. I had to go to battle to get this done. I already had one doctor in the Bay Area strongly suggest I had HYPP. She was right. Doctors listen to what you say and often ask if you've had stress in your life. Who hasn't??? If you go down that rabbit hole and give them a boo hoo story, that stops their investigation and they bop it off as just psychological. THAT is a major failure of doctors. I wish you the best in your journey.

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  @EmilyPloegman4 ай бұрын

  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.

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  @NanafiedEmm4 ай бұрын

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

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  @esteewaters16464 ай бұрын

  Thank you just came into this valuable information

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  @nihmanimmi49774 ай бұрын

  What about ahus . Ahus and vus are same ?

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  @karynd23684 ай бұрын

  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 ❤️🙏🏻

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  @malakamadhushanka45365 ай бұрын

  මටත් තියෙනවා 😢

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  @dr.thimmappaiahg92865 ай бұрын

  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.

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  @silvokorpic93125 ай бұрын

  Emg could show if a person has PPA? thanks

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  @alightinthetent6 ай бұрын

  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?

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  @Lisa-xo8uh6 ай бұрын

  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?

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  @PeriodicParalysisAssociation6 ай бұрын

  There is here kzread.info/dash/bejne/pHpnya-KnLbcXco.html and here kzread.info/dash/bejne/doSOlciTfq_MmJM.html discussing PPP medications. If you want someone talking more about personal applications then I would suggest submitting a question to the Ask the Experts section here periodicparalysis.org/ask-the-experts-disclaimer/

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  @Lisa-xo8uh6 ай бұрын

  Important study!

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  @StefanieRenea6 ай бұрын

  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!

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  @PeriodicParalysisAssociation6 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.

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  @beetlejuice46936 ай бұрын

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

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  @beetlejuice46936 ай бұрын

  I have the exact same problem