Did you know? People with Periodic Paralysis can see, hear, and feel everything during episodes, even when fully paralyzed.

#Disability #PeriodicParalysis

I am always fully aware during my paralysis attacks, but even when warning nurses and doctors that is the case they always freak out on me when I am totally non-responsive. Don't use sternum rubs on me. They just hurt real bad, but I CAN'T RESPOND!

This guy Dr Cannon speaking at the PPA conference is mega smart. How I’d love to just sit and talk to this guy! (He does not see patients, he’s focused on research. But will answer emails to help decipher genetic testing) #PeriodicParalysis

If you are a periodic paralysis patient, you can go to NORD's website at rarediseases.org to apply for patient assistance.

This just popped up on my IG. 🥹 I'm really happy to see NORD recognizes and offers assistance to periodic paralysis patients. 🙌 This has been such a long, lonely road for me. It's nice to see advocacy out there.

#PeriodicParalysis #HKPP #RareDisease #IonChannels #MuscularDystrophy #Channelopathy

An example of how profoundly effed up life is with #MECFS #LongCovid #MCAS #POTS #CCI etc… I just described an hour + long episode of #PeriodicParalysis to my spouse as “annoying.”

What a weird life I lead. #ChronicIllness #Disability

In learning about #PeriodicParalysis I am learning that periods of profound weakness are part of it — I haven’t sorted out yet what to DO about it. I know it means my electrolytes and ion channels are out of balance but I don’t know what I need more of or what I need less of or how to make it be

My ion channels are stupid. But bc my mast cells are also stupid there’s very little I can do about it. #PeriodicParalysis #MCAS #ChronicIllness

DYK Benadryl blocks potassium channels?

Starting to piece together why spates of #PeriodicParalysis episodes have been following major #MCAS flares.

A good description of #PeriodicParalysis is Best Frenemy. I have to coddle it like it was my best friend, but it likes to torture me if I don't perfectly coddle it.

Well, hello again, #PeriodicParalysis, my old friend.

I hate you.

Living with periodic paralysis: Ryan Csupak's fight for awareness on Rare Disease Day In the past 15 years, Ryan Csupak has been in an emergency room 30 to 40 times, unable to move his legs and arms. He’s experienced shortness of breath, extreme fatigue and weakness. This is the ...

Periodic Paralysis is a Rare Disease that can have a huge impact on your daily life and how you do everything in life. Often ERs have no clue what to do with us, because PP is hard to diagnosis, treat, and manage. It also varies widely between people.
#Disability #ChronicIllness #PeriodicParalysis

Home - World Periodic Paralysis Day Together, we’re finding strength and connection, and building a global community of support as we navigate this journey of life with Periodic Paralysis. Download The WPPD Flyer A Global Movement for A...

Explore resources and learn more: worldperiodicparalysisday.com

#RareKidsCAN #PeriodicParalysis #RareDiseaseAwareness #RareDisease #RareDiseaseResearch

I spend a large percentage of my day perfectly managing my home environment, diet, and triggers. To the point that managing myself to be a semi-functional adult is my job. A complex job that requires a ton of math to accomplish.
#Disability #PeriodicParalysis #Diet

#SCIG caused major flare ups of #MCAS and #PeriodicParalysis but substantially reduced my pain levels.

The flare ups are subsiding, which is great!

But the pain… is coming back. It’s not as bad as it was but it’s definitely increasing. 👎. #LongCovid #MECFS

I seem to be able to eat again without an #MCAS reaction or #PeriodicParalysis. I don’t know why, but I’ll take it.

Still have lots of foods I can’t eat but I’m back kinda to where I was before the scig, I think. 🤞

No paralysis today — woohoo! We’ll see what tomorrow brings. I have to leave the house for another medical appointment but not til the evening. #LongCovid #MECFS #PeriodicParalysis

Today I tried to head off impending post eating paralysis with my high dose potassium supplement and a Benadryl. It was probably the worst episode yet. So that was a failure. #PeriodicParalysis #LongCovid

The working theory rn is my #PeriodicParalysis is called see by electrolyte imbalances provoked by inflammation. That eating brings it on bc MCAS creates a sudden inflammatory rxn when I eat, electrolytes/ion channels go wonky, I get paralyzed. Tonight —

#PeriodicParalysis is crushing my spirit.

Also I think #MCAS doesn’t like my potassium Rx. Hard to tell tho bc reactions change day to day.

Don’t get covid. #LongCovid is a nightmare.

Oh my goodness this potassium supplement (powder to mix with water and drink slowly) tastes gross. Not quite as bad as the pregnancy glucose drink. But bad. I haven’t do this every day now 😫 #MECFS #LongCovid #PeriodicParalysis

(PDF) Periodic paralysis across the life course: age-related phenotype transition and sarcopenia overlap PDF | In Periodic Paralysis (PP), a rare inherited condition caused by mutation in skeletal muscle ion channels, the phenotype changes with age,... | Find, read and cite all the research you need on R...

I live with #Periodicparalysis ( HypoKaleamicPP- genetic mutation not yet identified) . It is great to see a new research article published. TLDR: yes, I will try CoQ10 again (also referred to in reference 66 from 2016) www.researchgate.net/publication/...