Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Hypokalemic Periodic Paralysis

What is Hypokalemic Periodic Paralysis?

Hypokalemic Periodic Paralysis is a rare disorder characterized by muscle weakness or paralysis.

 

Hypokalemic Periodic Paralysis is a rare disorder characterized by muscle weakness or paralysis.
Acknowledgement of Hypokalemic Periodic Paralysis has not been added yet.
1.0http://www.orpha.net
Synonyms for Hypokalemic Periodic Paralysis has not been added yet.
Cause of Hypokalemic Periodic Paralysis has not been added yet.
Symptoms for Hypokalemic Periodic Paralysis has not been added yet.
Diagnosis of Hypokalemic Periodic Paralysis has not been added yet.
Diagnostic tests of Hypokalemic Periodic Paralysis has not been added yet
Treatments of Hypokalemic Periodic Paralysis has not been added yet.
Prognosis of Hypokalemic Periodic Paralysis has not been added yet.
Tips or Suggestions of Hypokalemic Periodic Paralysis has not been added yet.
References of Hypokalemic Periodic Paralysis has not been added yet.
Excellent Management Strategy Identified Created by DaveAndRae
Last updated 5 Feb 2010, 11:21 AM

Posted by DaveAndRae
5 Feb 2010, 11:21 AM

Our friends seizures were like jerking. Sometimes they would last an hour, sometimes shorter. Sometimes they were gentle and other times they were violent. Our friends potassium levels were lower than they should be at the time of taking samples. One sample was taken shortly after a paralysis attack. Our friend does not need to worry about diet now, nor even stress. High salt or low salt, high carbs or low carbs. I can say now that it is a year down the track that our friend has done extremely well. She has no more seizures or paralysis at all, and no more pain in her muscles or muscle weakness. She has been through some huge emotional trials and has come through them without any serious side affects. On a couple of instances we saw a twitch of the neck muscle but that was as bad as it got. Maybe what we are saying here is helpful to some. I pray that it is. Signing off.

Posted by beck7422
12 Sep 2009, 12:54 AM

Seizures? Could you describe them in more detail? I have attacks that can be mistaken as seizures, called myclonic jerking. The standard trigger for this is cold. Anyone with suspected Hypokalemic Periodic Paralyis should check out the following web sites: http://hkpp.org/ http://hkpp.org/faq/periodic_paralysis.html http://www.periodicparalysis.org/ What were your friend's potassium levels, what was her state when the blood was drawn. I sometimes have full body paralysis attacks (none of my muscles moving or they are extremely weak and it is difficult to move them). Standard trigger is carbohydrates or it is too cold. When my muscles burn with the fire of a thousand suns, the cause is too much salt in my diet. If this is a problem, she should try to avoid eating salty foods as much as possible.

Posted by DaveAndRae
11 Sep 2009, 06:46 PM

That was the very frustration we had. There were no doctors willing to test for HKPP altough all of our reading suggested that was the case. We even had potassium levels tested and all the potassium levels were miles outside of the normal regions - even the doctors acknowledged that but they were not willing to test further. A question for you, why do you think our friend has such unexplainable seisures? It started about two years earlier with a freezing of the hand. Later it developed into various limbs, and for the last year it was her whole body at times, even the neck and facial muscels. The only thing that would not freeze was her eyelids and we communicated trough the eyelids.

View Full Thread (4 more posts)
Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Periodic Paralysis News Desk

Hypokalemic Periodic Paralysis FAQ on the Periodic Paralysis News Desk

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

37 Female Married Mom of Tw...
I have Hypokalemic Periodic...
My 2 year old son was diagn...
We are interested in this f...
Husband and son both have A...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Excellent Management Strategy Identified

Created by DaveAndRae | Last updated 5 Feb 2010, 11:21 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.