Hypokalemic Periodic Paralysis

Visit or Join The Hypokalemic Periodic Paralysis Forum where we can share our experiences with this rare malady.

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We're also not going to restrict discussion to HKPP, but expect to evolve into a general periodic paralysis forum since the more we learn, the more varieties of periodic paralysis we're learning about. For instance, HNPP which our co-admin is currently being tested for among other possibilities.  So:
All are welcome here to tell their stories

How our founders got here:

I was plagued with digestive problems attributed to gastritis and a general fatigue believed to be depression for well over a year.  Chronic back pain due to Spondlyosis was also a daily burden.  After a while, I came to accept this as my lot in life since I knew a lot of people far worse off than me

On the morning of April 26, 2006 I awoke from a nap to find that I was totally paralyzed except for the ability to use my right hand and uselessly wiggle a few fingers on my left hand. I had felt "funny" in the preceding few days but didn't know what to make of it.

The fire department had to take out a window in my house and remove me in a basket in order to transport me to the hospital. I then spent the next 6 days diapered and in frustrating agony as bit by bit movement very fortunately returned to my entire body.

The doctors were stymied at first and asked me many questions (I could speak) and finally concluded that I had an extremely rare condition with the unsettling name of Hypokalemic Periodic Paralysis. It affects fewer than 1 in 100,000 people and I had to join rarediseases.org to research it! The neurologists at the hospital had never actually treated a case of HPP, only read of it.

Since it is congenital in nature, it is believed that I have always had the potential of this happening. However it was dormant until gallstones that I was unaware of prevented several minerals to process to my pancreas, most notably potassium. This threw my entire body chemistry out of whack.

Fortunately, it is believed that removing my gall bladder will prevent future occurrences of this nightmare. They wanted me to stay in until the operation but I talked my way into a "furlough" from the hospital until May 9 when the doctors will remove the gall bladder.

Update: 05/26/06

After an uncomfortable but expected recovery from surgery two weeks ago, I suffered another blow to my health when I awoke on May 21th. to find my left arm virtually paralyzed! I was shocked, disconcerted and dismayed to say the least.

Went to the ER and explained my history, having to spell the name of my rare condition to the attending physician. A stroke was suspected, but fortunately a brain scan ruled that out.

It seems almost an impossible coincidence that I should suffer 2 bouts of paralysis within a month with different causes, but I suppose it's could happen. Perhaps the numerous IVs, injected dyes and multiple daily blood draws damaged a nerve. That's the only sense I can make of this, though a doctor said that would be unlikely.

At first, I couldn't type properly at all, my left hand just lay limply on the home row. Now I can type slowly but in short bouts otherwise an irksome "pins and needles" sensation sets in on my left arm. Other day to day tasks are similarly arduous at the moment. However, I am seeing improvement.

Update: 08/25/06

Though even after the gall bladder removal and regular intake of the prescription drug Klor-Kon and an excellent diet, I still wake upon occasion with a numb, paralyzed finger joint that lasts for weeks.  First the left pinky, currently the left middle finger.  My left eye tears often too.  No relation can be found between my bout with HPP and my current issues.  At first TIA'S were considered, but fortunately ruled out.  The most recent theory that I heard is that perhaps a nerve in my ulna bone in my left arm suffered some subtle damage causing this paralysis.  That theory seems to have gone out the window.  My potassium has returned to a healthy level though I still take the prescription potassium tablets as a precaution.  Things could be worse.....

Update: 12/06

Every month roughly, I wake up a surprise.  My left arm or hand is paralyzed to varying degrees and for varying lengths of time, ranging from 24 hours to over 3 weeks.  Things could sure be worse though. This is a light burden compared to what many endure - and not just HKPP victims. Still being back to one finger typing is frustrating and rather unproductive.

Now,  after a few months of Neurological consultations and test, 2 other diagnoses are being considered (in addition to the original Hypokalemic Periodic Paralysis):

1) Hereditary Neuropathy With Liability to Pressure Palsies/HNPP
2) Myasthenia Gravis

Update: 09/10

Indeed it is HKPP by all indications.  Attacks less frequent as I've been very diligent with taking Slow K and Calcium and reasonably diligent about maintaining a proper diet.

Of course I am in the middle of an attack now which reminded me to update this site briefly. Typing is hard so I'll keep it short.

Turns out the early, unrelated "Spondlyosis" is a whole heck of a lot more. In the ensuing years, it was treated with a perfunctory regimen of Chiro,  PT, injections and when lucky, pain medication. Fortunately I finally have a Doctor who realizes that the biggest impediment to my quality of life is not HKPP, but something more serious that's made me a virtual hermit. It's being evaluated both through serious orthopedic intervention (read surgery) and a whole bunch of medical tests to rule out -- whatever.

I'll be back!

Our co-founder is doing fine!

More stories of HKPP patients to follow......


coming soon!
More Info

The Authority Site for HKPP Information: Periodic Paralysis News Desk - hkpp.org - Do visit and join!

Besides other credible organizations we list, you can always trust data from sites associated with the National Institute of Health and the National Libarary of Medicine such as their page about Potassium related paralysis US National Library of Medicine and The National Institutes Of Health. When researching any disease or disorder, if the site URL contains NLM or NIH, you know you're getting facts.  More about that inside.

This link is to a forum where there is some related chatter going on

A large number of disorders cause Periodic Paralysis so it's worth joining The Periodic Paralysis Resource Center - now I'm no doctor, I was unable to attend medical school because of a technicality - no high school diploma. However,  I'm beginning to suspect one with Periodic Paralysis may have more than one disorder causing the episodes. JMHO, of course.

Please Support - NORD -  RareDiseases.org - devoted to disorders affect fewer than 200,000 people in the US.

The Umbrella Organization For Over 40 NeuroMuscular Diseases

muscular dystrophy association - devoted to research of over 40 known neuromuscular disorders
The Muscular Dystrophy Association needs your support also.  Remember, so many victims are children.

A Subsite of hypokalemic.org

----
NB:
It should be noted that our forum here, the HKPP forum is NOT limited to those in the US.  We want to hear from you where ever you are!

Read The Week In Review Today

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A Book Of Interest To Us:

 

Hypokalemia: A Medical Dictionary, Bibliography, And Annotated Research Guide To Internet References (Paperback) -

Book Description:
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, & printing.This book was created for medical professionals, students, & members of the general public who want to conduct medical research using the most advanced tools available & spending the least amount of time doing so.

 


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Many of us, including myself, have justifiably been quite vocal with our complaints about many aspects of the medical establishment.

I must tell you though that the many specialists who evaluated me went above and beyond to solve what was truly a medical mystery at first. This was clearly a challenge for the doctors and they were not going to quit until they figured out exactly what had happened to this relatively healthy 49 year old male. I was most impressed with their doggedness and concern for me. I'm told had it gotten any worse it would have paralyzed my lungs and breathing muscles!

I've also gained a new empathy for those who have to live with any sort of paralysis. Naively, I always thought you didn't feel pain when you were paralyzed. That is most certainly not the case.

I truly hope that more of us here (and everywhere) experience answered prayers as I did.
Do NOT confuse this disorder with the similarly named Hyperkalemic Periodic Paralysis
Hyperkalemic Periodic Paralysis is the opposite of this condition - too much potassium.  Potassium is a mineral which must be at just the right level for your body to function normally - or at all!
Of course, feel free to talk about your Hyperkalemic Periodic Paralysis experiences here too.

Visit or Join The Hypokalemic Periodic Paralysis Forum where we can share our experiences with this rare malady.

You can read posts and use resources without registering.
To POST  to the Forum, you'll need to register a User Name

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ADVISORY: No statements made within this site should be construed as medical advice. They represent the opinions and experiences of posters and others involved with this board.  This site is not intended to diagnose, treat, cure, or prevent any disease.  External links from this site may indeed provide solid medical opinions. Of course, we can make no firm guarantee with regard to the reliability of  information provided on external links from this site either. The safest statement that we can make is that there is no reliable substitute for the assessment of a physician who has examined you in person or who has access to your full medical history.


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