I wish doctors who diagnose people with psychosomatic issues like this would also refer them (or mention something they may wish to explore) is to find an online group of patients/individuals who experience the same symptoms...who do not agree with this diagnosis. Being labeled as having a psychosomatic manifestation when losing bodily control is so emotionally dysregulating..we need support in connecting with others who have moved past a psychosomatic experience to a real diagnosis just to counter balance this traumatizing experience. Thank you for this informative video.

@PeriodicParalysisAssociation

Жыл бұрын

Ehlers Danlos Mom, Unfortunately, many with rare conditions experience misdiagnosis of their condition for years. Many of the episodes on this channel have patients sharing how being misdiagnosed with many other conditions, including psychogenic, have delayed their correct diagnosis and treatment. On social media platforms such as FB, there are many groups that share their stories of misdiagnosis, it can be a great way to connect with other patients that can relate and possible provide guidance and support. We do not recommend such platforms or groups as resources for medical or diagnostic information. There tends to be a great deal of misinformation on some social media groups that can confuse and delay treatment and diagnosis. Managing such misinformation can be challenging for social media platform groups, and unfortunately, we cannot recommend one.

Dr Cannon's words are reassuring. Often doctors mis diagnose this rare disease and PPA website is highly educative

@PeriodicParalysisAssociation

3 жыл бұрын

Dr. Cannon has a world of knowledge on this subject. You can check out some of his research updates at the annual conferences here: kzread.info/dash/bejne/mKJ-x6iMhKyslNI.html

Thank you for giving us a voice‼️

@PeriodicParalysisAssociation

3 жыл бұрын

Thanks for watching!

The PPA is so happy to bring you this series! Watch every week for new episodes!

@PeriodicParalysisAssociation

3 жыл бұрын

Yes, be sure to subscribe so that you can stay tuned in for more episodes.

This is so exciting to finally have a voice!! Can’t wait to see the other episodes! Thank PPA. ❤️

@PeriodicParalysisAssociation

3 жыл бұрын

We are glad to help, Riley.

Well, I had to think of my mother, who endured such anxiety when I was young. Mom, we're looked after now! Cheers to PPA and Dr. Cannon.

@PeriodicParalysisAssociation

3 жыл бұрын

Thank you for your comment. Please join us in our mission by advocating for yourself, others with PP and by sharing this and other posts like this to spread awareness. Be sure to subscribe so that you can stay tuned in for more episodes.

I remember when dr told me all this, i asked him with tears in my eyes "so this is real" dr said yes. That moment i literally wished to have all those pplz in my life there so they cud realize, i was always right and neva made up anything😥😥😥😥.

@PeriodicParalysisAssociation

Жыл бұрын

Umer, thank you for sharing your experience with us. Patient stories help remind us that we are not alone.

Thank you so much for your organization and the wealth of information you share with us! Waking up and not being able to move is a scary thing and not something I would normally talk about in public, but now you have given us a voice!

@lindafeld9424

3 жыл бұрын

Use your voice for yourself and others. Help us spread the Awareness!

@PeriodicParalysisAssociation

3 жыл бұрын

It is our pleasure and mission to give PP patients a voice. Thank you for watching. Be sure to subscribe so that you can stay tuned in for more episodes.

Thanks for sharing. Its so good to understand that I am not alone. I am with PP for 40 years now and it is a continious challenge with the environment and yourself. There is no 100% security for any trigger in my case - I ate a lot and made a lot of sports and nothing happened and then without any of the known triggers its starts. The constant measuring of how much power I have today ... at this moment ... it never stops and so its quite hard to get relaxed. Knowing you are not alone helps. ooking forward for more videos! Greetings from Germany!

@PeriodicParalysisAssociation

3 жыл бұрын

Marc, thank you for sharing your struggles with PP. We are happy that you feel comfort in knowing you are not alone. We hope that the docuseries will continue to provide that and much more for you .

I do think this a possibility for me thank you

This is very informative, thanks

@PeriodicParalysisAssociation

3 жыл бұрын

You're welcome.

I have a clinical diagnosis of FHypokalemicPP. Just saw a neurologist and am waiting for my genetic testing. When both women said that they were told it was psychological it made me feel less alone. I went through the same thing.

@PeriodicParalysisAssociation

2 жыл бұрын

Katherine, thank you for sharing your feelings. We are so happy to hear that this video helped you feel less alone. We hope your genetic testing results yield some answers for you.

@MyFrausto

11 ай бұрын

I have hypokalaemic and it’s because of my potassium

Im mow 40 and been living with this since childhood. Ive literally spent my entire life explaining my problem to drs, parents and even friends but since i was healthy, strong being normal, vigorous and sportsman, no1 listened to me and matter of fact every1 come up with something like u r slacker, faint and making things up for now reason. Im from Pakistan btw.

@PeriodicParalysisAssociation

Жыл бұрын

Umer, we are sorry to hear that you have been treated badly by others. We are doing our best to spread awareness of this rare disease in hopes of stopping such treatment. Please share these videos to help spread awareness.

I now realize how amazing it was for a neurologist to have done genetic testing early on so we would have a diagnosis at age 13!

@PeriodicParalysisAssociation

3 жыл бұрын

Yes, you are very fortunate to have answers from such a young age. Thank you for watching the docuseries.

They gave me Fnd diagnose..changing nutrition is the key😊

@PeriodicParalysisAssociation

11 ай бұрын

Unfortunately, many with PPP receive a misdiagnosis of FND. We address that in one of our Ask the Experts videos, here is the link. kzread.info/dash/bejne/iHt83MZpfpPRpJs.html

@stellaancimer8505

11 ай бұрын

@@PeriodicParalysisAssociation thank you I agree.., but in the end it doesnt matter, if they see normal test they are like ok fnd goodbye, unfortunately..

@PeriodicParalysisAssociation

11 ай бұрын

Have you had a genetic test or a CMAP test? Blood tests alone can be unreliable for ruling PPP in or out. Knowing which type of PPP you have is extremely important for managing symptoms and a simple potassium blood test is not reliable for that diagnosis. We highly recommend that patients receive a genetic test and/or CMAP test (if genetic test shows no known mutation or variant) before a diagnosis is given.

@stellaancimer8505

11 ай бұрын

@@PeriodicParalysisAssociation I had gene test for narcolepsy, and all the blood test, they showed everything alright.. what kind of gene test you recomend? Thanks

@PeriodicParalysisAssociation

11 ай бұрын

There is a specific panel for primary periodic paralysis. If you live in the US, you can receive the test at no cost to you through Uncovering Periodic Paralysis, here is the link. www.invitae.com/en/sponsored-testing/uncovering-periodic-paralysis Outside the US you can contact Invitae directly through there webiste for your country. Once you receive those results, please contact our Ask the Experts on our website with any questions. Here is that link. periodicparalysis.org/ask-the-experts-disclaimer/

When i went to states for education, i had sever attack while i was sleeping which is mostly the case with patients of hpp. My friendz were confused, scared and i was asking for milk or something to eat as ive found this only remedy during attack. That was the fst time i got to know the medical term of my problem "hypokalemia periodic paralysis". Dr diagnosed this after asking me multiple questions.

@PeriodicParalysisAssociation

Жыл бұрын

Umer, a clinical diagnosis is the first step to finding answers. We also recommend a genetic diagnosis (if available) to help confirm PP and the type of PP. Proper treatment for the type of PP is key in patients being successful.

Been trying for years to get a diagnosis for my intermittent muscle weakness. Sure fits hyperkalemic periodic (weakness) paralysis. I've developed quite a bit of coping methods & adjustments to lifestyle, but I have to work around the weakness attacks. It's very frustrating. No other family member has my problems.

@PeriodicParalysisAssociation

3 жыл бұрын

Meg, have you had a genetic test? There are other conditions that can have similar symptoms of periodic weakness. The correct diagnosis and treatment is key to regaining your life back. Even within PP, knowing which form is important because the treatment is very different. I would suggest a genetic test if you haven't had one yet and even if no one in your family has similar symptoms.

@MegF142857

7 ай бұрын

@@PeriodicParalysisAssociation I did get to have a genetic test finally, which was negative. The 3 neurologists & internists have all told me that they cannot say I have HYPP or not, so basically I'm left on my own to try to learn how to cope daily. They have no answers. I've also seen a rheumatologist in the past. I know various things that this isn't, such as thankfully not MS or Lupus & other things. I continue to have intermittent muscle weakness. I've changed my diet quite a bit. I am including pacing & just basically have to work around the fluctuations in my abilities. Thankfully whatever this is, then as one doctor said "It's clearly not going to kill you." because I've had this so long. No, but it just f***s over my life. Guess everyone has something. I stopped riding horses & my life is a lot smaller, but I get by. -- Thanks. Maybe someday I'll find an answer, but reading about how ya'll cope has given me ideas for myself (on diet etc).

Then dr advised me one and only thing that im still stick to it since then, change ur lifestyle". He said there is no cure, no proper medics for this all u can do is change ur life style and make exercise part of ur life. So all the patients out there specially youngers, i know its frustrating, painful, annoying and discouraging and above all almost impossible to make some1 understand. Change ur lifestyle, live with this, do exercise everyday; gym, sports, running etc. More ur muscle get use too of workout more u will have control on this problem.

@PeriodicParalysisAssociation

Жыл бұрын

Umer, thank you for sharing how you have learned to live with the symptoms of PP.

so does anyone have their toes try and curl under the foot? Or have lingering pain in calves after an extended contraction of that muscle?

@PeriodicParalysisAssociation

2 жыл бұрын

Sorry to hear that you are having painful episodes. Muscle contractions are very common in patients with Hyper PP unfortunately.

Hei. I was wondering if a gene sequence done on a already negative c-kit mutation test on the scna gene rule out all forms of hpp? The geneologist ment that episod sog weakness from heat etc and stiffness brought on by cold would have nothing to do with hpp or myotonia. Facial paralsys on and of, swolloving difficulties,cramps, mcas high tryptase in serun. Basline 3_36 after mediator release. Pulmonal alvolear proteinoses autoimmune.gm-csf tested. Relative close, now deeceased had symptoms og weaknesses and pp but told psychological/wanting attention. Any advice?

@hellokikki81

Жыл бұрын

Getting these episodes from certain medications also,

@PeriodicParalysisAssociation

Жыл бұрын

Hellokikki81, this is a great question but unfortunately, we cannot answer medical questions on this platform. Also, the text is not coming thorough correctly and makes it difficult to understand. Please submit your question through our Ask the Experts. Here is the link - periodicparalysis.org/ask-the-experts-disclaimer/ Hopefully they will be able to provide you some answers.

This is the closest thing I’ve found to what I’ve been experiencing ever since having Covid last October. I’ve been prescribed potassium pills to take everyday to help with low potassium. When I get sick I run the risk of temporary paralysis..except it can be very painful. Often times my hands, fingers and legs lock up over a slow period of time until I can’t feel anything or move anything..however if someone was to stick a needle in my arm it would hurt 100 times worse than normal..it’s like I can’t feel my arms but I can..almost like their asleep but in a painful way. I also have to work on breathing during this time too. I don’t have anxiety or ever dealt with a lot of “stress” but when this happens it’s often hard to control my breathing. Every time I have to call 911/EMS to rush me to the ER. After a few hours and some IV I feel pretty normal. Again this has happened multiple times within the past few months but only when I’ve been sick with Covid, flu, or a virus. Never happens on a normal day

@PeriodicParalysisAssociation

Жыл бұрын

SundayVibesmusic, We are sorry to hear that you are struggling. You may find submitting your experience to the "Ask the Experts" on our website to see if they might be able to provide you some helpful information. Here is the link - periodicparalysis.org/ask-the-experts-disclaimer/

@SundayVibesmusic

Жыл бұрын

@@PeriodicParalysisAssociation thank you so much!

@BrianSladek

3 ай бұрын

Bro same thing I am dealing with right now! It seems carbs are a trigger at the moment like oatmeal. Had covid last year as well and since then things have gone downhill. Seeing bunch of specialists at the moment. If you have any updates please share

@SundayVibesmusic

3 ай бұрын

@@BrianSladek the only thing that helped was when I feel like it’s coming or when I get sick I make sure to take a lot of potassium and magnesium and it helped stop the severe cramps before it happened.. but still no answers to why it happens in first place

boy, just try taking notes into a doctors office or printouts. mine just gaslight me

@PeriodicParalysisAssociation

2 жыл бұрын

That is unfortunate. Remember, you can always replace your doctor if you feel they do not have your best interest. Controlling the symptoms of PP is easier with a doctor that provides support to their patients.

I feel completely alone and am struggling to get a diagnosis. Mine have been going on for a year and a half

@PeriodicParalysisAssociation

3 жыл бұрын

We are sorry to hear that you are struggling. Unfortunately many with PP can relate to your struggle for diagnosis/treatment. Please visit our website and FB page for resources and support. You are not alone. periodicparalysis.org/ Our Facebook page is Periodic Paralysis Association Be sure to subscribe to our KZread channel so that you can stay tuned for more episodes.

@patzxlg4263

Жыл бұрын

Same ..how are you treating it ?🥺🥺😩

hi I'm from the Philippines I'm currently 23 years old, I experience for the first time of weakening or paralyzed of my legs and arms I couldn't move. Back in the college I was having a very bad fever so I went to the doctor and the doctor said I have dengue so i was admitted they put me on dextrose i think it was NaCl to have my platelet increase but then i have my very first attack, then my body feel so weak i couldn't move an inch. they don't really explain what was happening to my body why is it i could not move then they put another dextrose they don't really explain what it was but i read it, it was potassium then it really hurt i feel the substance crawling on my veins it hurts. then i was relieved i did not experience another attack until i was vaccinated for covid i thought it was a side effect of vaccine but until now every now and then my arms and legs are so weak i cant even get up from my chair or bed, i don't know if you will see this comment but i hope you all help me please

@PeriodicParalysisAssociation

Жыл бұрын

JN Bons we are sorry to hear that you have been struggling with your health. Dextrose can certainly lower potassium and cause an episode in a patient with Hypokalemic Periodic Paralysis. May we suggest that you visit our website at periodicparalysis.org , you will find more information on Periodic Paralysis that might be helpful. You can also submit any questions you have to one of our experts through the Ask an Expert tab. Here is the link periodicparalysis.org/ask-the-experts-disclaimer/

Can you have it if no family members have this?

@PeriodicParalysisAssociation

Жыл бұрын

Yes.

I have hypoklemic pp, I had attck every 1or 2 months I'm so frustrated😫. Is there any permanent treatment for hypoklemic pp

@PeriodicParalysisAssociation

2 жыл бұрын

Rohit, for Primary Periodic Paralysis, sadly there is not. For Secondary Periodic Paralysis, possibly, it depends on the leading cause of the symptoms. Here is a link to diet and possible treatments for Primary Periodic Paralysis, which is what these videos are about. periodicparalysis.org/hypokalemic-periodic-paralysis-owners-manual/ I hope you find it helpful.

Is it actually possible for me to lower my serum potassium with my mind? I cannot understand how my decades long, below normal blood levels of potassium, during profound weakness, can possibly be psychosomatic. I'm declining rapidly after years of hypokalemia, per bloodtests. I have fixed weakness now after the longterm hypokalemia, at 62. I take huge amounts of potassium chloride, without ever having high potassium, per blood tests. Go figure. I had hoped I wouldn't die without knowing for sure what's wrong with me. Oh well.

@PeriodicParalysisAssociation

2 жыл бұрын

Kat, we are sorry to hear that you have struggled with answers for decades. Unfortunately, we cannot answer medical questions on this platform. You would need to submit your question through Ask an Expert on our website, here is the link periodicparalysis.org/ask-the-experts-disclaimer/

I just got diagnosed two weeks ago.

@PeriodicParalysisAssociation

2 жыл бұрын

Katherine, welcome. Getting the correct diagnosis is the beginning to gaining your life back. Now you can hopefully manage your symptoms better. If you haven't already, check out the PPA website. It is a great resource. I have attached a link. periodicparalysis.org/ Please don't hesitate to reach out from our website or FB page. You are not alone.

@rohitpawar7282

2 жыл бұрын

I have hypoklemic pp, is there any permanent treatment of that