วีดีโอ

I have thyrotoxic.periodic paralysis how to cure

Im not sure if i have this but im still looking for answers Right now my neurologist "suspects" hypokalemia but i only had one gene identified of unknown certainty and that is the ryr1 gene. In the past 2 days, i lost 5 hours of time needing to lay down only. Im 32 years old and i cant take long walks or lift anything too heavy. Please pray for me because i have two kids who need me.

I'm in the process of getting prescribed, wish me luck.

2 days ago i had my first bout of paralysis. I couldn't speak, open my eyes, move my arms or legs for around 1/2 hour . just waiting for diagnosis after blood test and chest? x-ray. my own research brought me here. x

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.

I probably have the same combination. But I have myopathic EDS, so...no muscle-exercises 😂 I went to emergency cause of breathing muscle paralysis after jaw-surgery (anesthesia) in July '23 and after 9 hours of cramps, pain and death struggle, the doctor sent me home with blood-O2 of 44% and tachycardia with the question: "Do you have a depression?" Your lungs are free. So you can breathe. The idea of HypoPP appeared two months ago by another neurologist and my doctor at muscle-centre means: "This ist impossible, cause you have EDS. Noone can have two rare diseases. But I will check your genome if you promise, not to ask anymore and accept that all your problems are cause of mEDS." I answered: "I never will. I want my life back and if not, I need to know the reason."

Who do you see to get assessed for this condition? I suspect I may have it as I get periods of paralysis I can't move for hours it does affect my breathing also I cough and gag during it ,it also makes me extremely tired during an attack my body won't let me wake up not sure if excessive fatigue is common with this, the paralysis affects my legs upper body, arms , I can't speak sometimes or my speech is slurred. Originally thought it was seizure related but my seizures don't happen often and the paralysis happens without seizure activity. I was diagnosed with FND functional neurological a few months ago but I don't agree with the diagnosis.

Why do my brothers attacks last for days and about the time he gets moving again it happens again.

This is what my brother seems to be experiencing and it is bad, bad, bad. No one seems to know why. He sees a muscle neurologist this month. It would be nice to learn what's going on and the fix if there is one.😢

Sir My Two Sons Are Effected Paramyotonia Congeniita

I've been getting these attacks since I was about 35 yrs of age. I'm 70 now. They happen most often in the morning, after eating carbs or exercising in the cold and generally last 20 - 30 minutes. They start in my right leg then go to my left leg and right, then left, arm and hands then sometimes go to my whole body and neck and it becomes difficult to breathe. During these attacks, my muscles have a dull ache. Afterward, my muscles ache and burn horribly. I get dismissed by doctors, they tell me it is imaginary so I just try to handle it myself with diet and management of activity. Thanks for posting this because it makes me feel a little less crazy.

Happened to me a couple of nights ago. It was terrifying, luckily my wife was with me and was able to call an ambulance

I have the issue of stifness in cold wheather and after excessive exercise. This is inherited from my father and my sister also have this issue butt not all siblings. How to cure this or atleast how to ensure that it should not transfer to next generation.

I had complete paralysis including my eyelids. I've had 3 of attacks 2011 2015 and 2019 and several abortive attacks and the doctors here have no knowledge of it and dismissed it despite my last attack showing low potassium and put it down as anaphylaxis even though tests showed no signs of one. I was given an epipen too.

How do I get an appointment with PPA?

I'm 48 my primary doctor is trying to get me a dx of Hypo KPP. So many years of being told im crazy or faking it. Many doctors brushing you off. I pray everyone gets heard & the help they need. It is a very frustrating journey.

I’ve had a FND diagnosis for over 5 years now and just was introduced to periodic paralysis possibilities. I’ve had my genetic test come back as normal and can’t get into a specialist until June of 2025. Please check out my FND WAVES channel to see some of my videos of my symptoms. I have identified a host of triggers - stress, overexertion, extreme temperature changes, low blood sugar (not diabetic), and visual and auditory sensory triggers.

Am curious if this might be a problem for me , as sometimes weak or get hand or foot locked up or weird carmps feet working up. Just thought was elctrolytes (Mg sometimes helps , pickle juic diluted also) . Fatigue from heat or cold or ? Thought could be low BG. Dr's say all fine as normal labs are fine. Can ck my 23andme data for some snps that show on Snpedia maybe when brain has better focus. Mom always had good energy (Dad not).

Wonder what other minerals are measured (and what forms) and if urine mineral analysis to see what lossing (more than normal).

I think I have it as well..Woke up at 3am couldn't move my legs hardly at all..Lasted about 14 hrs..My potassium was 2.2..4 pills and 2 bags of potassium at the hospital was able to stand..scary..A lot of praying today..

Permission to share

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. :)

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.