Serene Forest

Monday, February 29, 2016

What is Periodic Paralysis?? For "Rare Disease Day"



What is Periodic Paralysis?


Periodic Paralysis is a little known, misunderstood, under recognized and difficult to diagnose mineral metabolic disorder, also known as an ion channelopathy.

Do you have any of the following symptoms or a combination of them?

  • Episodes of muscle weakness or paralysis in an arm or leg or the entire body?
  • Wake up and cannot move?
  • Racing or erratic heart beat?
  • Fluctuating blood pressure?
  • Difficulty breathing at times?
  • Potassium levels too low or too high?
  • Strange or opposite side effects from medications?
  • Medications make your symptoms worse?
  • Difficulty with anesthesia?
  • Medical testing always negative?
  • Doctors cannot figure out what is wrong?

You may have Periodic Paralysis!

On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IV’s and much more, potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes. Gradual, progressive, muscular weakness can also affect the individual with this condition.

There are several forms of Periodic Paralysis:

Hypokalemic Periodic Paralysis

Paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium in the blood (hypokalemia) during paralytic episodes.

Hyperkalemic Periodic Paralysis

Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium in the blood (hyperkalemia) during paralytic episodes.

Andersen-Tawil Syndrome (ATS)

Paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts within the normal (normokalemia) ranges of potassium. An arrhythmia, long Qt interval heartbeat, is associated with ATS as well as certain characteristics, such as webbed or partially webbed toes, crooked little fingers and dental anomalies.

Normokalemic Periodic Paralysis (NormoPP)

Paralysis results when potassium shifts within in normal ranges. This can happen in any form of Periodic Paralysis. The paralysis may result from the shifting itself, rather than low or high potassium or it may occur due to the shifting of the potassium, which can happen very quickly and is undetectable in lab testing.

Paramyotonia Congenita (PMC)

The skeletal muscles can become stiff, tight, tense or contracted and weak due when the sodium channels close much too slowly and the sodium, potassium, chloride and water continue to flow into the muscles. It is actually considered to be a form of Hyperkalemic Periodic Paralysis, however, the symptoms can appear from shifting of potassium into low or high ranges or even if potassium shifts within normal levels.

Thyrotoxic Periodic Paralysis (TPP)

Intermittent paralysis results from low potassium due to an overactive thyroid or hyperthyroidism. It can occur spontaneously or can result from a genetic mutation. Unlike the other forms of Periodic Paralysis, TPP can be treated and cured by removing or treating the thyroid.

Diagnosing:

Diagnosing for Periodic Paralysis takes an average of 20 years! This is due to the fact that all other conditions must be ruled out. Some of the known types of Periodic Paralysis have identified genetic markers. This means they can be diagnosed by DNA testing. But, many mutations have not been found yet so individuals with Periodic Paralysis need to be diagnosed based on the symptoms and characteristics.

Treatment:

There are no known cures, but the symptoms can be managed for most individuals using natural methods including diet changes and eliminating the triggers.

Please join us or contact us at the Periodic Paralysis Network
for more information.

We provide HOPE to individuals with Periodic Paralysis through:

*Awareness
*Support…
*Education
*Advocacy

For more information please contact us at:


PPNI Blog:

PPNI Books:

PPNI Support Group:




Wednesday, February 3, 2016

Periodic Paralysis Awareness Campaign!!

Hello All,

Great News!!!! Our Periodic Paralysis Awareness Campaign has now begun!!!! It will last two weeks. The final day to order will be February 18.

There is a choice of 4 types of shirts. We have a sweatshirt hoodie, a shirt for women (more fitted), a long sleeve shirt and the general unisex shirt. These are all available in grey/silver (for potassium). We added a cream (signifies paralysis) color shirt and a PURPLE shirt. Potassium turns purple when it burns...so we wanted to add some fun for those who may want to make a bolder statement!!!!

We need to sell at least 50 shirts in order for them to be printed. The prices vary depending on the type of shirt. The general unisex shirt is $21.00.
The shirts will be sent out after the campaign closes. They do ship out of the USA.

This company has an outstanding reputation and has been wonderful to work with.

Thank you for your support.....

Donations may also be made.

Please share this with everyone!!!!

https://www.booster.com/periodic-paralysis-awareness