I get episodes of leg paralysis. I can’t move them at all. I went to a concert a couple of weeks ago, and fell after getting out of the cab. He took off, and I had to drag myself across the street, yard, sidewalk to the stoop. I used my cane to pull myself up, and was able to drag myself into the house. My neurologist actually said “unless you have something new to tell me, don’t call”. Before an episode, my fingers twitch, and I can’t type on my iPhone. That’s a sign my legs are going to go. I have no idea what’s going on. I’ve been in the ER several times with this.
Best wishes to you. I also suffer from temporary paralysis . Minerals helps with healing the body. Moringa droplets is all natural and packed with minerals such as iron and zinc and magnesium. Minerals helps with PMS and menopause. It is found in your local health food stores.
That is because Neurologists have no business working with PP Patients. This is a Mineral, Metabolic, muscle disease. Most of the Meds they say help, can actually make things worse and in some cases kill patients.
@@avg1712 which specialist would be right to diagnose and treat this? Sources please if you have any, just trying to figure out what doctors are struggling to (sounds silly but honestly has worked before because GPs can only know about so many conditions in order to correctly refer patients on)
I'm so sorry people have treated you badly when you could have done with a hand, and it sucks when doctors are dismissive instead of suggesting alternative specialists or approaches! Once I told a cabi I was about to have a seizure and he left me on my doorstep in the rain at night unable to get in... I don't understand people who are so inconsiderate and you deserve better! Know you're not alone and people are fighting for awareness and treatment ❤
So sorry you are enduring this. Glad more recognition of this life sucking issue is coming to light. But when ERs don’t know what to do, not near enough info is out there! I am age 63, I am awaiting results of my Genetic Testing. You have GOT to find a Neurologist that cares. I do not know where you are located, but there is a Periodic Paralysis Convention in Orlando Florida in October 2021. I understand that there are many Neurology doctor from different areas that come there to speak. Also, many other sources. Many sources meantioned in this video. So hoping for a more normal life, & hoping to avoid ending up in a wheelchair. Maybe that’s asking for too much, but it has got to get better. I never married, had no children. I am done putting my life on hold. Once confirmation comes back, yea or nah, at least I am around good sources. I will become an advocate for this condition; helping in anyway that I can, to inform society, so more can be done for early detection & living more fulfilling lives. I am located in an Orlando FL suburb. Dr Jernath is my Neurologist that is a 2008 Mayo Clinic Graduate, who specializes in Periodic Paralysis. Her Office is in Winter Park FL. Wonderful gal! I just met her in August 2021. Good Luck to you & NEVER GIVE UP!
I'm 25 and I've had these episodes since I was 19. They started after I contracted a nasty case of mono. I was diagnosed with POTS and an unidentified autoimmune disease, but I really believe this might be part of my bigger picture. I've had too many ER visits where they've given me potassium but can't find anything else wrong. It's terrifying, painful, and sometimes the chest pain and weakness gets so bad I worry I may not make it. Currently fighting to see if I can get a specialist who believes me. I wish nothing but good things for the other people out there living like this. I don't believe that rare illness is quite as rare as we say; only until everyone has access to healthcare will we get a fuller picture of these illnesses and who they affect.
This is a horrific condition to live with. I have this and go between Hypo, Hyper, and Normal Kalemic. Doctors need to step up and realize that it isnt a Neurological disorder. This is a Mineral, Metabolic muscle disease. I have had this for yrs and it runs in my family. The Meds like Acetazolamide Can actually be deadly for some, not helpful. It can be somewhat managed with diet. Mine are also horrifically painful. I cant speak, Move, yet hear everything, and am aware of everything. ER's can at times push K thru IV to fast as well, causing long QT and and even death. We need solid doctors from around the county who educate themselves on this condition. Tests don't always show you have it. I can minimize my attacks thru diet. Low PH diets are good, Gluten free diets are wonderful. I do not agree the PPA helps. They have many times kicked people out or refused to let them in their group if your Tests were not sent to a doctor in Germany. There are other Groups who work tirelessly to help people who have PP.
Hello, I’m 44 and just trying to figure out if I have this. It happens to me exactly how you are describing it. Can I talk to you, do you belong to a group of Facebook or something I can ask you?
I’m 12 and have what I call ‘attacks’ where I become paralyzed and can’t move for a minute or so. This happens to me very offten almost every time i get up from laying, sitting, etc. Running and walking can be difficult for me at time especially when walking around my school. It also doesn’t help I become disoriented in big crowds. Also a small fact is that my parents don’t know about any of this heheheh...
Really hope you don’t take this as rude I just feel for you big time as I’ve been there ( 12 ) and getting attacks without knowing what type I had. My legs are wreaked after so many untreated attacks hence saying get tested asap so you can help avoid your tiggers. The page below will help the page says There’s no cure however there are a few types of meds that some find help really helpful. www.webmd.com/brain/primary-periodic-paralysis Excuse my ignorance if you already know ; You need to figure what type of perdioc paralysis you have now tbh left unmediated you can end up in a wheel chair I don’t mean to scare you however finding a doctor and getting tested will help you figure what you need to eliminate from your diet. It will also help you in other ways honestly it was just like that for me my mum told me after a attack that I had hyperk and that was were the help ended. Such a mistake be proactive seek out a neurologist to get tested knowing witch type you have helps more than words can say. There’s various types of perdioc paralysis; hypo to little potassium and hyper to much potassium as well as ats and various however hypo is the most common albeit hyper k ect can also cause these symptoms. All the best
i was diagnosed with this every 10 days if i took potassium everyday to regulate it. i would wake up unable to move ro walk or slide or talk when i could get up i would cross walk i wouuld have to be diapered for 13 hrs. no babinski then as it would comme along it would fan then normal 1 to 3 days later it would also initially affect the trunk.i would often start out flaccid
I can't grip my hand after an asleep. Earlier it was in bit after midnight asleep only but i am having it during day sleep or when i lie flat. It is increasing day by day... anyone here who can tell me what is happening and where i am heaďing. I mean am i heading towards complete paralysis? Besides i am experiencing tremors in my leg, head body too...Please help ...
Is this related to sleep paralysis in any way. I have that 🤔🤔 I also feel like I get "stuck" at times. Like my body isn't getting message from my brain. I have Dysautonomia & neurological symptoms developing. I'm 27 needing a walker. I wake up at times unable to make 1 arm move at times. I'm disabled now. Trying to piece my health together.... My mother also in her 20s for 1 year 1 of her arms did not work. She couldn't move it & drs couldn't figure out why. Eventually it mysteriously became unparalyzed.
Why did the doctor only mention cold as a factor ? Heats a terrible tigger for me ( hyperk) during the cold i get stiff and painful myotonia. During the heat I can’t move the attacks are stronger. I was asked by doctor hanna what’s worse heat or cold tbh there both as disabling.
There is another Group who has been working tirelessly for years without Medication. It is based on diet. There are so many triggers, and to only say Cold is ridiculous.
@@avg1712 lol that’s kinda funny reading that today in you laugh or cry sorta way. As I got caught out by peanut butter last night darn another thing I will have to scratch of my diet. As I got older stuff I used to be able to tolerate I can no longer think I pushed peanut butter to the max it’s so frustrating not being able to eat things you like to eat lol nvm guess it’s the way it goes .
I agree with heat being a strong trigger. My attacks affect my entire body - even my lungs and breathing. I live in the SW and do pretty darn well during the cooler winter months. But when summer hits, I am restricted to cold cold refrigerated air to keep balanced. Staying off sugar helps too
@@tamitinajero2301 I guess your hypo if sugar is something you need to avoid. For me as a hyper it’s a food that helps break down my p level obviously as a hypo you wouldn’t want that. I also get myotonia that’s more cold effected years ago they said we can’t have both now there looking into it being connected you gota laugh or cry really.
Hai... saya pengidap hypokalemi dan beberapa kali terserang periodic paralise. Saya 1 kali masuk rumah sakit. Tapi saya sudah menemukan cara mengobati secara cepat. Yaitu air kelapa muda. Saat mulai terasa otot saya lemah saya minum 2 butir air kelapa. Dan 4 jam kemudian mulai pulih. Bila mulai terserang total air kelapa muda saya minum 4 butir dalam sehari. Sebelum saya lakukan ini, pada saat mulai terserang maka saya akan berlanjut menjadi lumpuh. Tapi setelah saya melakukan itu, minum air kelapa muda saat mulai merasakan serangannya maka saya tidak berlanjut terserang dan pulih total sebelum 24 jam.
how to get diagnose? my gene test was negative, potassium normal, but i have attacks every day, totaly weak, cant speak, my face is down, the nevrologist gave me fnd diagnose..thanks
what is the difference between this and body integrity Identity disorder where you also feel on top of that body parts are not real or do not belong to you if I have ppp then I can somehow force passed it like with sort of like adrenaline where I just with all my strength move
I have thyrotoxic periodic paralysis I can’t get out of bed sometimes and my dr has yet to prescribe a wheel chair when u try to take meds I’ll drop water everywhere bc my arms are so weak
I’ve had this all my life, and I got curious
I get episodes of leg paralysis. I can’t move them at all. I went to a concert a couple of weeks ago, and fell after getting out of the cab. He took off, and I had to drag myself across the street, yard, sidewalk to the stoop. I used my cane to pull myself up, and was able to drag myself into the house. My neurologist actually said “unless you have something new to tell me, don’t call”. Before an episode, my fingers twitch, and I can’t type on my iPhone. That’s a sign my legs are going to go. I have no idea what’s going on. I’ve been in the ER several times with this.
Best wishes to you. I also suffer from temporary paralysis . Minerals helps with healing the body. Moringa droplets is all natural and packed with minerals such as iron and zinc and magnesium. Minerals helps with PMS and menopause. It is found in your local health food stores.
That is because Neurologists have no business working with PP Patients. This is a Mineral, Metabolic, muscle disease. Most of the Meds they say help, can actually make things worse and in some cases kill patients.
@@avg1712 which specialist would be right to diagnose and treat this? Sources please if you have any, just trying to figure out what doctors are struggling to (sounds silly but honestly has worked before because GPs can only know about so many conditions in order to correctly refer patients on)
I'm so sorry people have treated you badly when you could have done with a hand, and it sucks when doctors are dismissive instead of suggesting alternative specialists or approaches! Once I told a cabi I was about to have a seizure and he left me on my doorstep in the rain at night unable to get in... I don't understand people who are so inconsiderate and you deserve better! Know you're not alone and people are fighting for awareness and treatment ❤
So sorry you are enduring this. Glad more recognition of this life sucking issue is coming to light. But when ERs don’t know what to do, not near enough info is out there! I am age 63, I am awaiting results of my Genetic Testing. You have GOT to find a Neurologist that cares. I do not know where you are located, but there is a Periodic Paralysis Convention in Orlando Florida in October 2021.
I understand that there are many Neurology doctor from different areas that come there to speak. Also, many other sources. Many sources meantioned in this video.
So hoping for a more normal life, & hoping to avoid ending up in a wheelchair. Maybe that’s asking for too much, but it has got to get better.
I never married, had no children. I am done putting my life on hold. Once confirmation comes back, yea or nah, at least I am around good sources.
I will become an advocate for this condition; helping in anyway that I can, to inform society, so more can be done for early detection & living more fulfilling lives. I am located in an Orlando FL suburb. Dr Jernath is my Neurologist that is a 2008 Mayo Clinic Graduate, who specializes in Periodic Paralysis. Her Office is in Winter Park FL. Wonderful gal! I just met her in August 2021. Good Luck to you & NEVER GIVE UP!
I'm 25 and I've had these episodes since I was 19. They started after I contracted a nasty case of mono. I was diagnosed with POTS and an unidentified autoimmune disease, but I really believe this might be part of my bigger picture. I've had too many ER visits where they've given me potassium but can't find anything else wrong. It's terrifying, painful, and sometimes the chest pain and weakness gets so bad I worry I may not make it. Currently fighting to see if I can get a specialist who believes me. I wish nothing but good things for the other people out there living like this. I don't believe that rare illness is quite as rare as we say; only until everyone has access to healthcare will we get a fuller picture of these illnesses and who they affect.
I cant believe this …it sounds like whats happening to me!
I have this shit. Life’s hard
This is a horrific condition to live with. I have this and go between Hypo, Hyper, and Normal Kalemic. Doctors need to step up and realize that it isnt a Neurological disorder. This is a Mineral, Metabolic muscle disease. I have had this for yrs and it runs in my family. The Meds like Acetazolamide Can actually be deadly for some, not helpful. It can be somewhat managed with diet. Mine are also horrifically painful. I cant speak, Move, yet hear everything, and am aware of everything.
ER's can at times push K thru IV to fast as well, causing long QT and and even death.
We need solid doctors from around the county who educate themselves on this condition. Tests don't always show you have it. I can minimize my attacks thru diet. Low PH diets are good, Gluten free diets are wonderful.
I do not agree the PPA helps. They have many times kicked people out or refused to let them in their group if your Tests were not sent to a doctor in Germany.
There are other Groups who work tirelessly to help people who have PP.
Hello, I’m 44 and just trying to figure out if I have this. It happens to me exactly how you are describing it. Can I talk to you, do you belong to a group of Facebook or something I can ask you?
Thanks Linda! You're a lifesaver!!! :-)
I’m 12 and have what I call ‘attacks’ where I become paralyzed and can’t move for a minute or so. This happens to me very offten almost every time i get up from laying, sitting, etc. Running and walking can be difficult for me at time especially when walking around my school. It also doesn’t help I become disoriented in big crowds. Also a small fact is that my parents don’t know about any of this heheheh...
Please look into using mineral water. Minerals helps with pms and weight gain and with healing the body.
Really hope you don’t take this as rude I just feel for you big time as I’ve been there ( 12 ) and getting attacks without knowing what type I had.
My legs are wreaked after so many untreated attacks hence saying get tested asap so you can help avoid your tiggers.
The page below will help the page says There’s no cure however there are a few types of meds that some find help really helpful.
www.webmd.com/brain/primary-periodic-paralysis
Excuse my ignorance if you already know ;
You need to figure what type of perdioc paralysis you have now tbh left unmediated you can end up in a wheel chair I don’t mean to scare you however finding a doctor and getting tested will help you figure what you need to eliminate from your diet. It will also help you in other ways honestly it was just like that for me my mum told me after a attack that I had hyperk and that was were the help ended. Such a mistake be proactive seek out a neurologist to get tested knowing witch type you have helps more than words can say.
There’s various types of perdioc paralysis; hypo to little potassium and hyper to much potassium as well as ats and various however hypo is the most common albeit hyper k ect can also cause these symptoms.
All the best
muscle weakness yes and muscle contactions that hurt so bad . Its real fun while your driving down the road
This is the condition I have...
I'm 12 and I have episodes rarely
I wasn’t diagnosed at 15 when I had symptoms at 5 and my Becker’s myotonia congenita autosomal recessive and know family member has myotonia
Anyone know how to reach Dr. Cannon? I called and emailed contacts i found online, but no response. I need his help!
What medicine is used in this
Mine was so annoying, it can be triggered by just yawning, coughing or sneezing
i was diagnosed with this every 10 days if i took potassium everyday to regulate it. i would wake up unable to move ro walk or slide or talk when i could get up i would cross walk i wouuld have to be diapered for 13 hrs. no babinski then as it would comme along it would fan then normal 1 to 3 days later it would also initially affect the trunk.i would often start out flaccid
I can't grip my hand after an asleep. Earlier it was in bit after midnight asleep only but i am having it during day sleep or when i lie flat. It is increasing day by day... anyone here who can tell me what is happening and where i am heaďing. I mean am i heading towards complete paralysis? Besides i am experiencing tremors in my leg, head body too...Please help ...
Is this related to sleep paralysis in any way. I have that 🤔🤔 I also feel like I get "stuck" at times. Like my body isn't getting message from my brain. I have Dysautonomia & neurological symptoms developing. I'm 27 needing a walker. I wake up at times unable to make 1 arm move at times. I'm disabled now. Trying to piece my health together.... My mother also in her 20s for 1 year 1 of her arms did not work. She couldn't move it & drs couldn't figure out why. Eventually it mysteriously became unparalyzed.
NO
Not the same but can have similar symptoms
I can always move. But it hurts.
Why did the doctor only mention cold as a factor ? Heats a terrible tigger for me ( hyperk) during the cold i get stiff and painful myotonia. During the heat I can’t move the attacks are stronger. I was asked by doctor hanna what’s worse heat or cold tbh there both as disabling.
There is another Group who has been working tirelessly for years without Medication. It is based on diet. There are so many triggers, and to only say Cold is ridiculous.
@@avg1712 lol that’s kinda funny reading that today in you laugh or cry sorta way. As I got caught out by peanut butter last night darn another thing I will have to scratch of my diet. As I got older stuff I used to be able to tolerate I can no longer think I pushed peanut butter to the max it’s so frustrating not being able to eat things you like to eat lol nvm guess it’s the way it goes .
@@hereaface I eat peanut butter, just not everyday, lol
I agree with heat being a strong trigger. My attacks affect my entire body - even my lungs and breathing. I live in the SW and do pretty darn well during the cooler winter months. But when summer hits, I am restricted to cold cold refrigerated air to keep balanced. Staying off sugar helps too
@@tamitinajero2301 I guess your hypo if sugar is something you need to avoid. For me as a hyper it’s a food that helps break down my p level obviously as a hypo you wouldn’t want that. I also get myotonia that’s more cold effected years ago they said we can’t have both now there looking into it being connected you gota laugh or cry really.
Hai... saya pengidap hypokalemi dan beberapa kali terserang periodic paralise. Saya 1 kali masuk rumah sakit. Tapi saya sudah menemukan cara mengobati secara cepat. Yaitu air kelapa muda. Saat mulai terasa otot saya lemah saya minum 2 butir air kelapa. Dan 4 jam kemudian mulai pulih. Bila mulai terserang total air kelapa muda saya minum 4 butir dalam sehari. Sebelum saya lakukan ini, pada saat mulai terserang maka saya akan berlanjut menjadi lumpuh. Tapi setelah saya melakukan itu, minum air kelapa muda saat mulai merasakan serangannya maka saya tidak berlanjut terserang dan pulih total sebelum 24 jam.
how to get diagnose? my gene test was negative, potassium normal, but i have attacks every day, totaly weak, cant speak, my face is down, the nevrologist gave me fnd diagnose..thanks
I suffer from sudden leg weakness and no doctor can figure out why is this happening and i have been suffering since I was a teen
I need help from Periodic paralysis Association
i also have this disease for 20 years.
what is the difference between this and body integrity Identity disorder where you also feel on top of that body parts are not real or do not belong to you if I have ppp then I can somehow force passed it like with sort of like adrenaline where I just with all my strength move
I have thyrotoxic periodic paralysis I can’t get out of bed sometimes and my dr has yet to prescribe a wheel chair when u try to take meds I’ll drop water everywhere bc my arms are so weak
i have this too :( because i have hyperthyroidism that causes my thyrotoxic paralysis
Please let me know how to treat it .. I'm sick of it 🤬🤬
🇺🇸
Guilty as a diagnosis 😋😢