What is Normokalemic Periodic Paralysis?

Hello All,

What is Normokalemic Periodic Paralysis?  

Before writing about Normokalemic Periodic Paralysis, I believe it best to review Periodic Paralysis in general. I have written several articles previously about the different forms of Periodic Paralysis namely Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis and Andersen-Tawil Syndrome.

What is Periodic Paralysis?

One of the neurologists who diagnosed me recently said, “Periodic Paralysis is a disease unlike any other. It is not a neuromuscular, mitochondrial or autoimmune disease nor is it a muscle myopathy. It is in a category all its own and needs to be treated in non-conventional ways.” He further stated, “Doctors need to keep an open mind and think ‘outside of the box’ when it comes to diagnosing and treating Periodic Paralysis.”

The following is an overview of the condition gleaned from years of research and my own experience.

Periodic Paralysis (PP) is an extremely rare, difficult to diagnose, hereditary, mineral metabolic disorder characterized by episodes of muscular weakness or paralysis, a total lack of muscle tone without the loss of sensation while remaining conscious. It is passed from either the mother or the father to any of the children, male or female. It is an ion channelopathy, a condition involving dysfunction of an ion channel for potassium, sodium, chloride or calcium. Ion channels regulate ions as they flow in and out of the cells.

There are several known types:

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

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

Normokalemic Periodic Paralysis (Normo PP): Paralysis results from the movement or shifting of potassium within ranges, which are normal (normokalemia).

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 in the normal (normokalemia) ranges of potassium.

Normokalemic Periodic Paralysis

The commonly accepted range for normal potassium in human beings is 3.5 to 5.0 mEq/l (milliequivalents per liter), but these numbers may vary somewhat among labs. Our bodies work to naturally maintain a fine balance, which is within that normal range. Ninety-eight percent of potassium in the body is located within the cells and the other two percent of potassium is outside of the cells in the blood. Blood testing in a lab is used to measure the potassium in the body. There are also a few different types of potassium readers available for purchase and use in the home.

For individuals with Periodic Paralysis, the “normal” ranges of potassium may vary significantly from person to person. Results from a survey revealed some feel well and are at their best at about 5.0 while others may do best at 3.8 or 4.3. The potassium for these individuals shifts in several ways depending on the type of PP causing many symptoms as discussed previously. It may shift higher or lower. These shifts may be very slight yet cause paralysis as well as other serious symptoms including but not limited to heart, breathing and blood pressure issues. The shifting may also happen very quickly and be undetectable. This shifting is then within the “normal” ranges of potassium, thus the name “Normokalemic” Periodic Paralysis, although some research indicates it is not necessarily a distinct or different form of Periodic Paralysis, but rather Hyperkalemic Periodic Paralysis. However, it appears that 58% of those with all forms of PP actually have episodes of potassium shifting within normal ranges according to a recent survey of individuals diagnosed genetically and clinically.

Because most of the emphasis, literature and studies written about Periodic Paralysis are about Hypokalemic Periodic Paralysis (low potassium) and Hyperkalemic Periodic Paralysis (high potassium), the majority of medical professionals do not understand or recognize Normokalemic Periodic Paralysis or the knowledge that the potassium does not have to shift outside of normal ranges or that it may shift too quickly to be detected to create the paralysis or other symptoms which may be serious or life-threatening. It may also shift high or low and return to normal ranges before an individual can be tested in a lab or be seen in the ER.

This makes it difficult when an individual is seeking a diagnosis. Neurologists suspect neurological issues and prescribe very harmful medications, which may cause new symptoms or physical therapy, which can be painful and cause episodes of paralysis. Unfortunately, this may then lead to misdiagnoses of pseudo-seizures, conversion disorder, malingering, attention seeking, and/or hypochondria. More inappropriate and harmful medications and treatments are prescribed to treat these issues. The mis-labels follow the patient from doctor to doctor and the individual is never taken seriously.

These same issues are rampant in an ER situation. Potassium in normal ranges, with paralysis and other issues and uninformed medical professionals, can add up to all of the above and the administration of IVs filled with sodium or glucose with a psychotropic drug to treat pseudo seizures. This can lead to more serious symptoms, permanent damage and even death for an individual with Periodic Paralysis.

Another problem resulting from potassium shifting within normal ranges for someone who has a diagnosis of Periodic Paralysis, especially Hypokalemic Periodic Paralysis (low potassium), is the issues of automatically taking a dose of potassium when symptoms begin or being given an IV with potassium in the ER when the potassium never left normal range. This may then cause a shift into high potassium levels and create new or worse symptoms.

For those who have symptoms and paralysis while potassium levels remain within normal ranges, the best way to know how to treat it is to take note of the symptoms and record them. If one is able to record the levels of potassium at home, keeping a running tally when symptoms begin will eventually show either a trend toward high or low potassium or a shifting both ways as is common in ATS. Depending on whether one gets better or worse when taking potassium, may also be a clue of either high or low potassium. Discovering and avoiding the triggers that set it off is recommended.

When in paralysis and accompanying symptoms, there may be actually nothing that can be done except for time to pass and things to return to normal, because the potassium is already in normal range. Remaining calm is also recommended in order to avoid stress which can cause more shifting of potassium. If at previous times, taking potassium helped, then it may be recommended. If the potassium made it worse, it might be wise to avoid it.

An ambulance does not need to be called nor does someone need to be rushed to the ER, doctor or hospital every time they become weak or paralyzed due to potassium shifting. Most individuals will be fine in a few hours. However, if one is having serious difficulty with breathing, heart, choking or swallowing, then an ambulance may be necessary. Otherwise, the only important reason for going to the ER, if a person does not have a diagnosis, is to get the attacks documented, a "paper trail" is often needed. Proof of the episodes must be established.

From Wikipedia:

“Also of note is that potassium levels do not have to range outside of normal limits to cause serious, even life-threatening paralysis. These diseases are not the same as having a very low level of potassium (hypokalemia) or high potassium (hyperkalemia) and must not be treated as such. The total body store of potassium is usually normal; it is just in the wrong place.”

For more information on when to call for emergency care can be found at:

http://livingwithperiodicparalysis.blogspot.com/2013/12/when-to-call-for-ambulance-december-3.html

http://rarediseases.info.nih.gov/gard/4009/normokalemic-periodic-paralysis/resources/1

http://www.nlm.nih.gov/medlineplus/ency/article/003484.htm

http://www.ncbi.nlm.nih.gov/pubmed/22926674

http://omim.org/entry/170600

http://en.wikipedia.org/wiki/Periodic_paralysis

www.bami.us/Diet/Hyperkalemia.html

October 1, 2014

I would like to add another important source to this article:

Hypokalemic Periodic Paralysis:
"Serum potassium level decreases during attacks but not necessarily below normal."  "Creatine phosphokinase (CPK) level rises during attacks."

Hyperkalemic Periodic Paralysis:"Serum potassium level may increase to as high as 5-6 mEq/L. Sometimes, it may be at the upper limit of normal, and it seldom reaches cardiotoxic levels. Serum sodium level may fall as potassium level rises."

http://emedicine.medscape.com/article/1171678-workup

Added July 25, 2015

"Normokalaemic periodic paralysis: In these attacks the blood potassium remains normal

In fact, it has recently been discovered that it is not the change in the blood potassium level that is the
primary problem in periodic paralysis. The primary problem in all of these conditions is that the normal pores which exist in the walls of the muscle cells don’t work properly. It does seem that changes in blood potassium levels can further hinder the function of these pores and that is why changes in blood potassium can be relevant. However, other factors separate from blood potassium can also worsen the function of the pores, so a change in blood potassium is not essential."

http://www.musculardystrophyuk.org/app/uploads/2015/02/periodic-paralyses.pdf


Until later…‎

Conversion Disorder vs Periodic Paralysis

Hello All,

(There are many names for it....conversion disorder, somatization, functional disorder (FND), lying, faking it, and much more...but nearly everyone of us has been treated as if we were faking our symptoms and some of us have been diagnosed with 'conversion disorder'...it is so wrong and we continue to hear the horror stories as our new members join us.....)


The term "conversion disorder" comes up often in our support group. We have all been victims of this mislabel much to our detriment. With each wrong diagnosis and wrong medication we get sicker, more damage is done to our organs and permanent muscle weakness sets in. We risk death each time we go into paralysis. My blog today is about conversion disorder.

Although it took me 62 years to get a diagnosis, statistics indicate it takes approximately 20 years for someone to get a diagnosis for Periodic Paralysis. This is inexcusable and is due to several factors. First, everything else must be ruled out and secondly, because it looks “fake” to doctors. One of the physicians, who originally diagnosed me, told me that of the few patients he has had with Periodic Paralysis, they were all diagnosed with “conversion disorder” before they got their diagnosis. I myself received this diagnosis, as did most of the more than 1,000 members of my Periodic Paralysis Network Support and Education Group.

This did not happen 100 or 50 years ago, but in the past few months. One young woman went into full-body paralysis lasting many frightening hours. She came out of it to discover she was in such a weakened state that she could not walk or even do something as simple as getting dressed without becoming totally fatigued and she was in total body pain. Doctors evaluated her and sent her to a psychiatrist. She was diagnosed with conversion disorder and prescribed a well-known drug used to treat depressive disorders and a well-known pain reliever. She spent the next few months unable to walk and in excruciating pain and in and out of paralytic attacks each lasting many hours. She was unable to work or take care of her young children.

Upon learning of Periodic Paralysis (PP), after much research, her husband discovered the effects of the drugs on someone with PP. He found out that both medications had elements that can actually trigger the paralytic episodes. Immediately she began to taper off of them. Within weeks, the pain began to ease; she was able to stand and walk a few steps with help and became somewhat functional again. After a few more weeks she was walking with the aid of two canes and able to do simple tasks. She did not have any episodes of paralysis for two months. Though she does not have a diagnosis and probably will not get one for some time to come, her psychiatrist now regrets his diagnosis and prescribing the drugs. He has been referred for more tests to possibly diagnose Periodic Paralysis.

Another patient, an older man, has suffered with paralytic episodes for years. Gradual muscle weakness ensued until this person had to give up a teaching career. Testing ruled everything else out and a muscle biopsy revealed damage to muscle fibers consistent with PP. Despite these findings, after being forced to see a psychiatrist, the man was diagnosed with conversion disorder while in the hospital because of almost constant paralytic episodes.

This is just the tip of the iceberg for individuals with Periodic Paralysis. They have unexplained bouts with partial to total body paralysis, which include frightening heart arrhythmia; choking; fluctuating blood pressure and heart rate. While in this state they are unable to communicate, they are given IVs with medications/drugs/compounds, which make it worse. They are able to hear everything going on as the doctors insist they are faking it, insisting they are having pseudoseizures, pinching them or sticking them with needles to make them respond, demeaning and insulting them and their family members. Conversion disorder is written in the charts and comments like, “refused to lift leg when asked” was written rather than the truth, which was “cannot lift his leg when asked.” Some people actually die during these horrific ER or hospital stays and the death certificate may contain any number of false causes.

What is a conversion disorder? According to R.J. Brown,  "Conversion disorder presents with symptoms that typically resemble a neurological disorder such as stroke, multiple sclerosis, epilepsy or hypokalemic periodic paralysis. The neurologist must carefully exclude neurological disease, through examination and appropriate investigations. ¹

According to the DSM-IV-TR (2000) six criteria exist for diagnosing conversion disorder:

• The patient has one or more symptoms or deficits affecting the senses or voluntary movement that suggest a neurological or general medical disorder.
• The onset or worsening of the symptoms was preceded by conflicts or stressors in the patient's life.
• The symptom is not faked or produced intentionally.
• The symptom cannot be fully explained as the result of a general medical disorder, substance intake, or a behavior related to the patient's culture.
• The symptom is severe enough to interfere with the patient's schooling, employment, or social relationships, or is serious enough to require a medical evaluation.
• The symptom is not limited to pain or sexual dysfunction, does not occur only in the context of somatization disorder, and is not better accounted for by another mental disorder.

 http://www.minddisorders.com/Br-Del/Conversion-disorder.html#ixzz2nMNX3sEJ

Brown also suggests, "Another feature thought to be important was that symptoms would tend to be more severe on the non-dominant (usually left) side; there were a variety of theories such as the relative involvement of cerebral hemispheres in emotional processing, or more simply just that it was "easier" to live with a functional deficit on the non-dominant side. However, a literature review of 121 studies established that this was not true, with publication bias the most likely explanation for this commonly held view.[15] Although agitation is often assumed to be a positive sign of conversion disorder, release of epinephrine is a well-demonstrated cause of paralysis from hypokalemic periodic paralysis.[16]" ^{2, 3}

In conversion disorder, it is believed that the patient is unaware that he or she is causing the symptoms and he or she is very frightened. The symptoms come on suddenly and usually get worse. The main symptom is called pseudoparalysis.

“In pseudoparalysis, the patient loses the use of half of his/her body or of a single limb. The weakness does not follow anatomical patterns and is often inconsistent upon repeat examination”.

 http://www.minddisorders.com/Br-Del/Conversion-disorder.html#ixzz2nMhCccgP

These differences are key but problematic. Stress, good or bad, can be a trigger for an episode of paralysis, so an examining doctor may ask and discover there has been some stress in the recent past of the individual. The second issue is that most episodes of paralysis are full-body, but some may only have partial paralysis and only half of the body or only one limb is affected. There is not a person alive who would not be very frightened to become suddenly paralyzed and end up in the ER in need of medical attention. The episode may be inconsistent if the patient is given an IV or medication. This may cause new symptoms. Upon examination in an hour or two, either they are coming out of it or worse with different symptoms. This may all happen if someone has Periodic Paralysis.

 One further thing that needs to be noted; the statement about epinephrine is very concerning. If a medical professional knows that epinephrine can cause a paralytic episode in someone with Hypokalemic Periodic Paralysis or Andersen-Tawil Syndrome, he or she may take it upon themself to use it on the patient to trigger an episode. This can kill someone with PP so should never be done. Seeing it in writing in a study can lead an inexperienced doctor without all of the facts to try it. Provoking an episode to prove or disprove someone has a conversion disorder is absolutely not to be done. One of our young members died last year in this exact manner.

In all of my research, each article I found on the subject of conversion disorder listed Periodic Paralysis or one of its forms as a differential diagnosis; a condition that looks like or mimics it.

 
It makes me wonder if, in fact, individuals who actually had some form of Periodic Paralysis have been mistaken for conversion disorder and were the actual models for it. By that I mean, did people who were in actual full body paralysis due to PP or those who were in partial paralysis become the first individuals seen as having pseudoparalysis and that pseudoparalysis really does not exist?

  

So, as far as I am concerned, when an individual arrives in the emergency room in paralysis with no known cause, it should first be assumed that he or she has a form of Periodic Paralysis and he or she should be treated as such. Never should he or she be considered faking, adding more stress which, then leads to more paralysis. A protocol for treating Periodic Paralysis should then be followed.

1.     Brown, RJ. "Psychological mechanisms of medically unexplained symptoms: an integrative conceptual model." Psychol Bull. 2004 Sep;130(5):793–812.

2.      Roelofs K, van Galen GP, Keijsers GP, Hoogduin CA. "Motor initiation and execution in patients with conversion paralysis." Acta Psychol (Amst). 2002 May;110(1):21–34.

3.      16. Brown, R. J.; Cardena, E.; Nijenhuis, E.; Sar, V.; Van Der Hart, O. (2007). "Should Conversion Disorder Be Reclassified as a Dissociative Disorder in DSM V?". Psychosomatics 48 (5): 369–378. doi:10.1176/appi.psy.48.5.369. PMID 1787849

Until later...

Avoiding the Pitfalls of the Emergency Room

Hello All,

I have posted two blogs about emergency issues related to Periodic Paralysis. The first was about knowing when to call for an ambulance or when to seek medical help. The second was my story about my experiences with the Emergency Room (ER) and    why most of us who have Periodic Paralysis fear the ER and the doctors we must deal with there. Today’s post is about how we can better prepared and get the care we need if it is necessary to be seen in the ER.

I created the following after my own experiences and knowing that in the future I would probably have to be seen again in an emergency situation.

Avoiding the pitfalls of the emergency room

Since I received my diagnosis, due to the previous mishaps in the ER and the hospital, I have taken a trip to the hospital with all of my records. I had them copy all of my information. This is for four reasons. First, to prove my diagnosis; second, to teach the doctors about Periodic Paralysis; third, to educate the doctors so they will know how to treat me the next time I am in a crisis and fourth; to clarify all the lies and misdiagnoses.

While there, I explained that they have to monitor my breathing; make sure I do not choke and monitor my heart due to the tachycardia, and arrhythmias, watching especially for the long QT interval beat. They are not to hook me to an IV, not to give me glucose or any medications. They are not to use a tourniquet or have me make a fist if they need to take my blood.  They should look through my file and/or folder for any other info they may need. It is also important for them to now listen to your significant other (if you are lucky enough to have one), who will be your voice, if you cannot speak or explain things to them.

Since that conversation, and now having everything in place for the next emergency, I feel better about the possibility of having to ride in an ambulance and being admitted to the hospital if needed in the future.

The following is my outline plan:

1.      Call hospital administration office

a.      Explain your problem

                                                                          i.      Tell them the history of visits and the problems during them

                                                                         ii.      Tell them about your fears due to the previous visits

                                                                        iii.      Explain your diagnosis or possible diagnosis

                                                                         iv.      Explain your plan to bring in all your records for your file

                                                                          v.      Ask how you can speak to the supervisor of the ER

2.      Call the ER supervisor or make an appointment to meet with him/her

a.      Explain your problem

                                                                          i.      Tell them the history of visits and the problems during them

                                                                         ii.      Tell them about your fears due to the previous visits

                                                                        iii.      Explain your diagnosis or possible diagnosis

                                                                         iv.      Explain your plan to bring in all your records for your file

3.      Meet with ER supervisor or representative in person

a.      Bring your significant other or a friend or family member

                                                                          i.      Present your records

1.      Name and numbers of your doctors

2.      Information about Periodic Paralysis

a.      Your personal Emergency Chart

b.      Bring the book: Living With Periodic Paralysis: The Mystery Unraveled

c.      Copied from the internet

                                                                                                                                               i.      The types

                                                                                                                                               ii.      Andersen-Tawil Syndrome?

                                                                                                                                              iii.      Hypokalemic Periodic Paralysis?

                                                                                                                                               iv.      Hyperkalemic Periodic Paralysis?

1.      How to take your labs

2.      How to treat your symptoms

3.      How to diagnose, if not done yet

3.      Your diagnosis reports (from doctors) if you have them

4.      List of medications you can not have

a.      No IVs

b.      No medications that paralyze

c.      No meds that cause long QT (if it applies)

5.      List of medications you take

6.      List of other medical issues

a.      Possibly diabetes, heart problems, etc

7.      Records of previous labs and tests which helped with the diagnosis or ruled other things out to include but not limited to:

a.      EKGs,

b.      Holter monitors results

c.      EMGs

d.      EEGs

e.      Muscle biopsy

f.        Sleep studies

g.      Pulmonary study

h.      Physical therapy

8.      Letter from therapist clearing you of mental issues

a.      Good to be seeing a therapist to help deal with

                                                                                                                                                 i.      Failing health

                                                                                                                                                ii.      Moral support

9.      Possibly a standing prescription from your doctor:

a.      “if muscle weakness or paralysis”

                                                                                                                                                  i.      “Blood serum labs for Potassium”

10. Have hospital records copied by:

a.      Records department or

b.      ER personnel

11.  Explain anything else you believe is important

12.  Always carry a plastic folder with copies of the above   information in case you find yourself out of your local area in an emergency.

A year ago, Calvin and I moved to a new home in another state. I immediately called the nearest fire department and hospital. I explained my medical issues. The fire chief took notes and the hospital asked me to bring in my records to have them be put in the system. I did just that.

About two months ago, this was all put to the test when I had a possible small stroke (TIA). Calvin called 911 and my doctor. She called the hospital ER and told them about my condition (Periodic Paralysis). When the paramedics arrived, Calvin handed each of them my emergency chart with instructions. They read them, asked a few questions and got to work checking my vitals and getting me ready to transport me to the hospital. With Calvin’s coaching, they followed every detail and I was safely taken to the ER. Upon arriving, the same thing happened. More copies were made of my emergency chart and the doctors referred to my medical records already in the system. They were very careful with everything they did or did not do to me or for me.

 
Calvin and I were very happy and relieved. They believed us and followed our instructions. We no longer fear a trip to the ER. However, with the co-pays and expenses related to an ambulance ride and a few hours in the ER and the testing involved, we now fear that we cannot afford to call 911. I am paying nearly half of my social security check towards being covered, but the costs we must still pay, make it nearly impossible to ride in an ambulance, go the ER or see specialists. I believe I have a new idea for another blog?!

Until later…

Periodic Paralysis and the ER…The Narrative December 4, 2013

 

Hello All,

Today I am posting something I wrote awhile back to describe and explain my experiences in the emergency room (ER). It is the second of three articles I will be posting on this subject. Those of us with Periodic Paralysis fear going to the ER and you will understand when you read the following narrative.

                                  Periodic Paralysis and the ER…The Narrative

The following narrative and article is difficult for me to write. Going through my medical records is stressful due to all of the negative things written about me, the misdiagnoses, the unkindness I endured, the opportunities missed by the doctors to treat me appropriately, the horrible reactions to the medication I suffered and the fear I have been left with when I think about returning to the emergency room (ER). I have contemplated how I was going to write this and after much thought, I have decided to tell the experiences in as much detail as I can, so the reader can understand my frustration and fear. By sharing my experiences in this manner, I hope to help others avoid what happened to my husband and me in the ER and hospital. After writing my experiences, I will outline a plan to help others avoid the pitfalls of the emergency room.

I found myself in the emergency room (ER) of my nearest hospital, in a small town in Oregon on four different occasions due to symptoms related to Periodic Paralysis. Three of those times I was taken by ambulance and the last time my husband drove me. Three times I was admitted for further observation. Each time I was released, I had no diagnosis or a misdiagnosis. Each time I was given medications that made me worse. Each time I was mistreated. My hospital records are filled with lies and misleading statements, misinformation and misdiagnosed conditions such as "pseudo" seizures. These have followed me since my first visit to the ER and continued to interfere with getting a diagnosis and proper treatment.  It has been a life-threatening and continuing nightmare that could have been avoided if someone in the ER or the hospital had taken me, my husband and my symptoms seriously in the very beginning. Had this disease been caught earlier, I would not be as ill as I now am. I must presently be on oxygen 24 hours a day and my heart is seriously damaged, electrically.

My first ambulance ride and hospital stay was on September 30, 2008, as the result of heart palpitations (felt like it was beating out of my chest), tachycardia, arrhythmia and chest pain, early one morning. I was sitting at the computer when it began. I took a nitroglycerin tablet but it didn’t help so I took another one. The pain continued so I got up to walk to the bedroom to tell my husband. I could not walk and landed on the floor. I could not move. My husband heard and then came to help. He called 911. They arrived in what felt like a very long time. We lived 10 miles outside of town in the mountains. The paramedics placed me on a stretcher and wheeled me to the ambulance. They hooked me up to an IV and after checking all my vitals, asked me to sign a paper. I found I was unable to hold the pencil. After what seemed like another long period of time, we began the drive to the hospital.

Once at the hospital, I was doing a little better. I was hooked up to all of the necessary machines and equipment and all types of tests were performed. After several hours, the doctor walked in and was about to send me on my way, when suddenly my heart went into tachycardia. He changed his mind and had me admitted. During my stay I was continually on an IV which hurt horribly, but they would not fix it (A few weeks later I got phlebitis in my arm due to the IV and twice ended up in the ER to get an antibiotic for it.), and given several medications including tylenol, ativan, zophran, morphine and ambien. I had severe problems with walking and tremoring. After they gave me the morphine in my IV, I had an immediate reaction of sudden chest pain and palpitations and passed out. After one night and two days they discharged me, with an unknown diagnosis, but the suspicion that I had chest pains due to my acid reflux although the lab work indicated I had some type of event with my heart. I was given reglan, upon my discharge, a medication for the reflux. Once home I was doing better, but when I took the medication after dinner, I went into tardive dyskenesia, it lasted all evening and through the entire night.

What I know now, from the hospital records obtained recently, is that the labs indicated a possible heart attack or ischemia. Cardiac enzymes were elevated and testing ruled out pulmonary embolism. The doctor had me admitted to rule out an ischemic cardiac event. Ischemia is an absolute or relative shortage of the blood supply to an organ. It was not ruled out, but the cardiac event was obviously due to my periodic paralysis that we did not know I had at the time.

Had we known, I should not have been on an IV due to it causing paralysis to people with Periodic Paralysis. I should not have been given the other medications due to the side effects of them and the long QT interval problem. At the time we did not know what was wrong, but the effects at the hospital should have given them clues about what was going on. They were ignored or misinterpreted.

Unfortunately, the hospital recommended a coronary angiogram to be done after I left the hospital but neither my PCP nor cardiologist ever let me know about it. They both left town within a few months after that and it never happened. That could have been a turning point for me and I could have received some help, however, I didn’t know about it and the new doctors did not follow-up.

In July of 2009, my life changed forever.  At that point I had just found a new doctor because my previous doctor had left town for a better position in another state.  The first doctor I went to told me I was too sick and that he would not be my physician.  I left out office crying my eyes out and went straight to the insurance company.  They gave me the name of the doctor who was accepting new patients.  I was able to get an appointment with him for the next morning.  At first he seemed like a caring doctor but was upset with the number of medications I was taking, as was I.  I was on 15 medications at the time.  I was having ataxia, tremors, tachycardia, and palpitations and having trouble speaking.  I told him I was very concerned over all the symptoms and asked if he would help me.  He asked me to stop taking a few medications, which I did, and that I was to return to him future.

However on July 27, 2009, I had what appeared to be a seizure of some type. It was about the fourth time in the past 10 weeks, but by far, the very worst. I was unable to speak, walk or move in any way; I was totally paralyzed. I also had tremors and jerking in my muscles. These contractions throughout my body made it look like seizures. However, I was never unconscious. I knew everything that was happening. As before, I was wheeled to the ambulance and hooked up to an IV. My vitals were checked and one of the paramedics gave me some glucose by mouth. He told me I was hypoglycemic. I was lucky I did not choke on the honey-like substance. My heart rate was over 160 and I was given ativan. We finally left the driveway and headed to the hospital. Within a few minutes, my body was jerking worse, especially my legs and feet. They were beating against the back door of the ambulance.

By the time I got to the hospital, I was worse than when the ambulance arrived at my home. I assumed it was due to the glucose. I do not remember arriving at the hospital or what followed until I woke up while my husband was arguing with the doctors. They told my husband I was having seizures, but that they did not take care of seizures at the hospital and in the ER. They made my husband take me home with 12 tablets of ativan. Records show I did appear “ataxic” and “spastic” during some of my motor exams and the one of the doctors gave his reassurance that, “Sometimes it takes years to make diagnoses, especially when they are difficult and the symptoms presented are so varied, such as in this case”.

For the next two days, I remained in this state.  I was in and out of consciousness. I was getting worse and unable to function. My husband, being concerned, called my new doctor and asked if there was any way I could be admitted to the hospital because he could not feed me or take care of me.  After a few phone calls and my counselor/therapist getting involved, an ambulance arrived and took me back to the hospital. I do not remember much about that trip. I was admitted. The doctor was very angry and treated me horribly and put falsehoods in the records. At this point I could relate all of the lies and distortions, but have decided not to. Since that time, we know that all of the medications I was on and the ones the new doctor gave me and the ones from the hospital including the IVs, caused most of the symptoms. These symptoms combined with episodes of paralysis caused symptoms that they just did not understand. But being told to my face that he was referring me to a psychiatrist and that I was “making it all up” was horrifying and frightening when I was so ill.

I was sent home after a day. I spent the next several weeks in bed unable to do anything for myself. During that time, I found another doctor who put me on new medications without trying to discover what was wrong. The medications made me worse. My husband had to bring his sister in from another state to take care of me. I spent months recuperating and actually never have fully recovered.

At this point we realized we had to find another doctor.  I could not find another M.D., and had to settle on a nurse practitioner.  She was very helpful and was glad to take me as a patient. By now, we begin to realize that the medications were creating terrible symptoms for me.  I got off of them as quickly as I could.  We realized that almost all of the symptoms of ataxia, tremors and problems with my speech had been related to medications. I stopped taking every medication I was on. Most of the ataxia, and tremors, etc stopped. Then, I began to have episodes of total paralysis. During them, I was unable to talk, open my eyes or move. I sometimes had chest pain, tachycardia and palpitations with them. They were frightening and we believed them to be related to my heart.

On the evening of February 19, 2010, I went into a serious episode. I was having trouble breathing during it for the first time. When I could speak, I asked my husband to call an ambulance. They arrived as before and put me on an IV.  At the hospital, I was hooked up to the machines and the testing began anew. It was noted that I spoke in a “slow and low voice with flat affect” (my mouth was paralyzed), and that I had “weakness in my lower extremities”. My oxygen was at 96% saturation and my heart rate was 116 with a blood pressure of 147/58. They did admit me for observation.

Once admitted, I lay in the bed going in and out of paralysis, each one lasting between about 30 minutes to an hour. I know because all I could do was lay there and look at the clock when I was able to open my eyes as each episode eased up. During that time, the nurse looked in occasionally and told me that the doctor would be there soon. It was at least 3 hours from the first time she told me, that a doctor finally came to examine me. He wrote, “Initially, she is conversant but then she goes into an episode of being unresponsive and some mild shaking. It looks in my experience to be a ‘pseudo’ seizure.” He told me that and told me he was going to treat me with ativan. My husband told him not to do it. After he left, it was administered in my IV. Within a few minutes, I was very nauseous. The nurse brought me something for the nausea. I then threw up and the next thing I remember was waking up about 10 hours later in the morning.

I had no idea where I was. I thought they had moved me to another room. I tried to send my husband an email. When he got it he knew something was seriously wrong. I could not write or spell. He came and took me home before they could give me any more medication. He was afraid they would kill me if that were to happen. The hospital records say that I, “responded well to the medication”, that I was being discharged in “stable and significantly better medical condition after taking the ativan” which, “completely relieved my symptomatology suggestive that his diagnosis of ‘psuedo’ seizures was correct”.

This is an out and out lie…the medication knocked me out and when I regained consciousness, I could not talk or walk or do much of anything for myself. I was in and out of the paralysis again. I was able to send an email…with a few words and a phone call to me from my husband confirmed my husband’s worst fears. I was slurring my words and not making any sense to him. He came right away. He had to dress me and lift me into a wheelchair. He took me out of the hospital with no discharge plan. The record states that both my husband and I were “agreeable to the discharge plan”. This “plan” lasted 30 minutes. This is ridiculous because there was no discharge plan.

That is the last time we dared to call an ambulance or go to the hospital no matter how sick I got. There were several times when I should have been there, but we were very afraid of what they would do and how they would treat us. Two times we know now, after obtaining copies of the labs, I was in metabolic acidosis and really needed to be seen in the ER. I nearly died both times.

No one should be too afraid to go to the hospital. No one should be afraid of doctors. No one should have to take their chances of staying home and hoping they will not die because they fear what the doctors will do to them. No one should fear going to the hospital because they will be given medications they should not have. No one should fear going to the hospital because they will be told they are mentally ill. No one should fear going to the hospital because they will be scoffed at. No one should fear going to the hospital because the doctors will not believe him or her. No one should be afraid to go to the hospital for fear the doctors will lie about him or her.

I know of many others who have Periodic Paralysis and are diagnosed and others who are not diagnosed, who have had similar experiences to mine. This is happening all over the world. They, like me, live in fear of ending up in the ER. This is just not acceptable. ER doctors need to be able to recognize and know how to treat Periodic Paralysis correctly. It is my hope that this blog, our website and our book will finally shed some light on this rare syndrome for the doctors of the world.

I am now diagnosed, and still fear going to the ER and to the hospital. However, I have discovered a way to change this. Tomorrow I will write about how to avoid the pitfalls of the emergency room.

 Until later...