Serene Forest

Wednesday, June 24, 2015

Identify And Eliminate The Triggers Of Periodic Paralysis: Part Two

Hello All,

As I wrote in Part One, nearly everyday, new members join our PPN Support, Education and Advocacy Group. Their most important concerns are about getting treatment to stop or manage their symptoms/paralysis and/or getting a diagnosis. I have already written articles about how to find a good doctor and how to get a diagnosis, which may take many years, but to this point have not written about how to identify and eliminate the triggers that set off our symptoms and paralysis.

As I have written before, there is no magic drug or cure for Periodic Paralysis. There is an off-label drug that only works for a few mutations and even then, there are and can be, serious side effects, long term side effects and most individuals continue to experience paralysis and symptoms. So despite having a diagnosis and possibly taking the off-label drug, most individuals need to know how to manage their symptoms and episodes of paralysis, because most triggers continue to set these things into motion.

For those still waiting for a diagnosis and hoping for drugs/treatment from a “specialist” the diagnosis will probably not bring a successful treatment. So, while waiting for a diagnosis, or if one has a diagnosis and is on the off-label drug and still experiencing symptoms or if someone has a diagnosis but cannot tolerate the off-label drug; the best way to manage the symptoms and paralytic episodes to is identify the causes or triggers for those symptoms and episodes.

This is part two of a Blog Article about how to identify and eliminate triggers.

From our book: The Periodic Paralysis Guide and Workbook:

Identify And Eliminate Triggers
AVOID - CHART - JOURNAL - MONITOR


  • Record symptoms and possible causes
  • Monitor symptoms
  • Keep a journal
The charts and how to use them:





Trigger Chart

Fill in the date.

  • Begin recording your activities, food, drink and medications in the top section. Start at the time you wake up. Include all food eaten in a meal. Record what you are doing, for instance sitting, eating, reading, exercising, walking, cooking, shopping or more.
  • Record how you are feeling, for instance, good, very thirsty, constipated, confusion, sleepy, unsteady, legs are weak, total paralysis or more.
  • Put a check mark in, (or fill in) the box that best describes your condition, for instance normal, weak, more weak, partial paralysis, more partial paralysis, or total paralysis.
  • Continue this through your day, it is not necessary to do it at night, but you may want to include paralysis, numbness, or more, if it is happening at night.
  • The bottom of the chart will become a graph and it will aid in seeing the times of symptoms.

In the completed chart below, we can see that two and one half to three hours after eating breakfast and taking septra, an antibiotic and a calcium tablet, the patient begins to experience weakness and then paralysis. It is a good chance that the medication or something eaten at breakfast was the cause.

If this person eats the same thing everyday and takes the calcium every morning, and the only new thing is the septra it would be safe to assume the antibiotic caused the episode. By four pm the episode has stopped. At five pm muscle weakness begins after an hour of being up and preparing dinner. This may be from exercise intolerance or due to something eaten at lunch.

If someone eats the same lunch everyday but does not always help with dinner, it could be safe to assume the exercise caused the weakness. The same could be true in reverse. At seven pm, overall weakness takes hold for the remainder of the evening. This may be from the food eaten at dinner or a continuation of the weakness from the earlier activity. During the night there are three episodes of total paralysis. Since sleep is a trigger, it may be impossible to stop the episodes throughout the night.



Evaluating the Data

When looking at your completed charts, it is best to first check the periods of paralysis. Then check the activity, medications taken or food eaten two to three hours before that time. Was anything new? Was any activity out of the ordinary?

  • Check period of paralysis or weakness:
    • Check two to three hours before.
      • New medication?
      • New food, drink?
      • New activity?
        • More than usual?
        • Longer than usual?
  • If answer is not clear: Continue to chart for a few days. If there seems to be a pattern:
    • Change only one thing at that time:
      • Remove sugar or
      • Cut medication dose or
      • Stop or reduce the activity
        • Less than usual
        • Shorter than usual
  • Check again after a day or two. If the symptoms of paralysis are reduced or better, you may have found the trigger. If not, add the thing you removed or reduced back into the meal, etc. Then repeat and change something else: 
  • Change only one thing at that time:
    • Remove sugar or
    • Cut medication dose or
    • Stop or reduce the activity
      • Less than usual
      • Shorter than usual
  • Repeat until you find the trigger or triggers.

Some suggestions for how to avoid the triggers once they are found:

  • On feet too long? : Break the activity in several shorter periods on feet.
  • Cannot eat sugar? : Stop and try sweeteners, honey, stevia, etc.
  • Cannot eat certain food? : Find replacement or do without.
  • Cannot take medication? : Cut dosage, stop taking or get a replacement (under supervision of medical professional).
  • Sitting too long? : Get up every hour or less and move around.
  • Sitting too long? : Exercise in chair.
  • Dehydrated? : Drink more water, set timer.
  • Hungry? : Eat several smaller meals.
  • Too hot? : Wear looser, cooler clothes, use neck cooler.
  • Too cold? : Add clothing layers, use a blanket, drink hot drinks.
  • Cannot drink caffeine: Drink decaffeinated drinks.

As the triggers are discovered and eliminated the attacks of paralysis and other associated symptoms will begin to decline. The quality of life will improve. The information will be recorded and can be shared with the doctors and used as a tool during the diagnosing process. Use the following blank page to record your own triggers as you discover them.


Monitoring the Triggers and Symptoms

Once many of the triggers have been established and a diagnosis has been obtained (or not), it will be necessary to continue to observe and monitor the symptoms and the triggers. As we have discovered from my our experience and that of others with Periodic Paralysis, the triggers may change over time or what may have seemed to be the cause, may not actually be the cause. It is important to keep track continually in order to regulate and control the symptoms.

For instance, at first it may appear that sugar eaten in a cookie is the culprit causing attacks of muscle weakness or paralysis. Later it may be discovered that it was actually the white flour or the chocolate in a cookie that may have caused the episode. Accidentally, it may be figured out that a person might be able to eat small amounts of sugar in a gluten-free cookie. Then after eating the gluten free cookie everyday for three days, a paralytic episode occurs. This may be that too much was eaten. So, it may be that small amounts of sugar may be eaten occasionally, just not everyday.

It is a fine line that an individual with Periodic Paralysis must walk everyday. We must move through life as if we are walking a tightrope. It has been said that when we figure out what our triggers are, we must treat them as if they are allergies, something we must avoid. However, it becomes a problem when those things are important elements needed in the body such as salt or sugar.

In discussion with other individuals, we also have discovered that surprising things may actually cause an attack. We may believe we are doing everything correctly and avoiding all triggers and then we suddenly slip into full body paralysis. This happened to me recently. I tripped on my oxygen cord and landed on my knees. I scraped up one of them, but otherwise felt fine. Three hours later I was in full body paralysis.

After discussing this with a friend and wondering what had caused this attack, he reminded me that adrenaline is released when the body is stressed or experiences some trauma. I realized that although I did not notice much when I fell except a small scrape to my knee, my body had recognized it as trauma, released adrenaline and three hours later I was paralyzed and for the following several days.

Now I will remember that if I fall again, no matter how small or uneventful it may seem, I must prepare for the possibility of slipping into paralysis. I will be sure to rest and hope it will neither happen again nor be as serious as the last time. Better yet, I need to be more careful, now that I know if I fall, I will go into paralysis (or break a bone knowing I have severe osteoporosis).

Monitoring or keeping track of triggers is important because it seems as if they are always changing and maybe they are or maybe it is the amount of something we are using, but also it may be that we have misinterpreted one trigger for another. We must use the charts to keep track of symptoms and possible triggers and put them together in a journal. The information in the charts and journal will be recorded and can be shared with the doctors and used as a tool during the diagnosing process or for treatment options.


Until later...




Identify And Eliminate The Triggers Of Periodic Paralysis: Part One



Hello All,

Nearly everyday, new members join our PPN Support, Education and Advocacy Group. Their most important concerns are about getting treatment to stop or manage their symptoms/paralysis and/or getting a diagnosis. I have already written articles about how to find a good doctor and how to get a diagnosis, which may take many years, but to this point have not written about how to identify and eliminate the triggers that set off our symptoms and paralysis.

As I have written previously, there is no magic drug or cure for Periodic Paralysis. There is an off-label drug that only works for a few mutations and even then, there are and can be, serious side effects, long term side effects and most individuals continue to experience paralysis and symptoms. So despite having a diagnosis and possibly taking the off-label drug, most individuals need to know how to manage their symptoms and episodes of paralysis, because most triggers continue to set these things into motion.

For those still waiting for a diagnosis and hoping for drugs/treatment from a “specialist” the diagnosis will probably not bring a successful treatment. So, while waiting for a diagnosis, or if one has a diagnosis and is on the off-label drug and still experiencing symptoms or if someone has a diagnosis but cannot tolerate the off-label drug; the best way to manage the symptoms and paralytic episodes to is identify the causes or triggers for those symptoms and episodes.

This is part one of a Blog Article about how to identify and eliminate triggers.


From our book: The Periodic Paralysis Guide and Workbook:


Identify And Eliminate Triggers
AVOID - CHART - JOURNAL - MONITOR

  • Record symptoms and possible causes
  • Monitor symptoms
  • Keep a journal

This Blog Article...will discuss the elements or experiences, which trigger or activate the potassium to shift causing the attacks of periodic paralysis and how to identify them. There are some common triggers among those with the different forms of Periodic Paralysis and there are some triggers, which are unique for each individual. Triggers can be certain medications, foods, activities, stress or even sleep. It is important to know one’s triggers in order to avoid having episodes or attacks of paralysis due to permanent damage, which may occur to organs in the body.

One of the most important things a person with Periodic Paralysis can do, no matter which type they have, is to discover what causes, starts or triggers our episodes of muscle weakness or paralysis. There are many triggers that set into motion the partial and total paralysis and other symptoms. It is important to discover these triggers because we need to stop the episodes or attacks, if possible, in order to regain the quality of our lives and to prevent the damage being done to our organs as the potassium shifts and depletes or increases in our bodies.

Potassium shifting can cause a myriad of conditions and the symptoms that accompany them, including permanent tightness of the calf muscles or muscle wasting of arm and leg muscles, restless leg syndrome or even osteoporosis. The breathing and swallowing muscles can weaken over time and be affected during attacks. If this happens it is an extremely serious and emergency situation. Dangerous arrhythmia of the heart can also occur when an individual is in an episode or attack. In the case of people with Andersen-Tawil Syndrome, the paralysis leads to tachycardia and serious arrhythmia, including long QT intervals, which can lead to cardiac arrest. Other complications can include respiratory arrest causing death or aspiration pneumonia after an attack, causing death. Though rare, these can occur with Hypokalemic Periodic Paralysis. Complications of Hyperkalemic Periodic Paralysis include bi-directional heart arrhythmia causing sudden death and permanent weakness of the muscles. Between attacks, the muscles usually return to normal or strengthen, but over time with repeated episodes of paralysis, progressive and permanent weakness of the muscles which can be severe is possible. This includes the heart and breathing muscles. This can lead to heart failure and respiratory failure, thus eventual death. Avoiding paralysis is absolutely necessary, due to these life-threatening effects.

The easiest way to decide what caused an episode or symptoms would be to look at anything new or different; a new type of bread, a new antibiotic, a new activity, a new shampoo, stressful event (good or bad), or a chilled or over heated room. Discovering our triggers requires a little bit of time to follow a simple plan. In a matter of a few days or weeks, it may be possible to draw some useful conclusions about the possible triggers of a paralytic event and the symptom, which can accompany them.

In the fields of medicine and education, it is said, “If you did not write it down, it did not happen.” This can be applied to our method for discovering our triggers. The first thing we must do is to write everything down. Creating a journal is a good way to make sure this is done. I have created a chart, which can be added to a journal to make the process easier (This will be added to part two of this article).

Several necessary components are included on this chart:

A 24-hour time frame
A section to write possible triggers
A section to write down symptoms and vitals one may be experiencing
A section to record the muscle weakness and paralysis
This section becomes a graph of the periods of weakness or paralysis

Once the information has been gathered for a few weeks, it will be easy to see trends or connections of a particular food, medication or activity to muscle weakness or paralysis.
The following are lists of the common possible symptoms of Periodic Paralysis one may experience as well as the paralysis and muscle weakness and the triggers, which may set them into motion.

Understanding and becoming familiar with the symptoms is another important part of completing the chart. As much information that can be added will be helpful. In this section anything may be included from “feeling well,” or “none,” to some of the known symptoms for hyperkalemia and hypokalemia in the following charts.

The following are at-a-glance lists of typical symptoms and triggers for the different forms of Periodic Paralysis and vitals needed to complete the charts.

The Symptoms Typical Of Low Potassium:

  • Episodic muscle weakness
  • Episodic partial paralysis
  • Episodic total paralysis
  • Episodic flaccid paralysis (limp muscles, without tone)
  • Muscle weakness after exercise
  • Muscle weakness
  • Muscle stiffness
  • Muscle aches
  • Muscle cramps
  • Muscle contractions
  • Muscle spasms
  • Muscle tenderness
  • Pins and needles sensation
  • Eyelid myotonia (cannot open eyelid after opening and then closing them)
  • Irritability
  • Severe thirst
  • Abdominal bloating
  • Nausea
  • Vomiting
  • Constipation
  • Excessive urination
  • Sweating
  • Tachycardia
  • Irregular heartbeat
  • Palpitations
  • Dizziness
  • Fainting
  • Breathing problems (barely breathing)
  • Hypo-ventilation
  • Increase in blood pressure
  • Irritability

Vitals To Add To The Chart As Symptoms:

  • Potassium level
  • pH level (saliva)
  • pH level (urine)
  • Glucose (sugar) level
  • Temperature
  • Blood pressure
  • Heart rate
  • Arrhythmia
  • Oxygen

The Symptoms Typical Of High Potassium:


  • Episodic muscle weakness
  • Episodic partial paralysis
  • Episodic total paralysis
  • Muscle contraction or rigidity during an attack
  • Muscle weakness
  • Muscle cramps
  • Muscle stiffness
  • Fasciculation (muscle twitching)
  • Pins and needles sensation
  • Cramping pain
  • Reduced reflexes
  • Muscle contraction involving tongue
  • Slurring of words
  • Tightness in legs
  • Strange feeling in legs
  • Tingling sensations
  • Pulse issues  (absent, slow, or weak)
  • Irregular heart beat
  • Heart palpitations
  • Breathing problems (wheezing, shortness of breath, fast breathing)
  • Mild hyperventilation
  • Decrease in blood pressure 
  •  Nausea
  • Feeling hot
  • Sleepiness  

More Possible Symptoms For The Chart:
 
  • Headache
  • Chest pain
  • Numbness
  • Unable to walk
  • Agitation
  • Shallow breathing
  • Pain in calves
  • Cramps in legs
  • Restless legs
  • Burning in feet
  • Hyperventilation
  • Feeling cold
  • Clammy
  • Dizzy
  • Shaky
  • Unsteady
  • Rubbery legs
  • Hunger
  • Jerking
  • Awake
  • Confusion
  • Strange feeling in legs
  • Brain fog
  • Sleeplessness
  • Memory problem
  • Depression
  • Weakness
  • Constipation
  • Foot drop
  • Dry mouth
  • Choking
  • Angry



Triggers

The Common Triggers Of Hypokalemic Periodic Paralysis

The triggers usually responsible for causing potassium to shift in Hypokalemic Periodic Paralysis are:

  • Eating a large amount of carbohydrates in a meal
  • Drinking alcohol
  • Ingesting too much salt
  • Stress (good or bad)
  • Excitement
  • Fear
  • Vigorous exercise
  • Resting after exercise
  • Cold
  • Epinephrine/adrenaline
  • Cold
  • Anesthesia

The Common Triggers Of Hyperkalemic Periodic Paralysis

The triggers usually responsible for causing potassium to shift in Hyperkalemic Periodic Paralysis are:

  • Eating a large amount of carbohydrates in a meal
  • Exercise
  • Cold
  • Ingesting too much potassium in food or medications
  • Stress (good or bad)
  • Rest after exercise
  • Fatigue
  • Fasting
  • Cigarette smoke

The Common Triggers Of Paramyotonia Congenita

  • The triggers usually responsible for causing potassium to shift in Paramyotonia Congenita are:
  • Exercise
  • Exertion
  • Repetitious movement
  • Cold
  • Sleeping in


Other Triggers For Periodic Paralysis

Triggers can include:

Diet: Diet can be one of the biggest contributors to episodes of paralysis. The following are some of my offenders or those that have been reported to me or I have found in the research:
  • Simple carbohydrates: sugar, white flour and more
  • Complex carbohydrates: some grains, wheat, rye and more
  • Meat: mostly red meats
  • Salt
  • Caffeine
  • MSG
  • Alcohol
  • Large meals
  • Gluten

Sleep:
All aspects of sleep may set episodes into motion:
  • Falling asleep 
  •  During sleep
  • Waking up

Other:
  • Dehydration
  • Fasting
  • Sitting too long
  • Changes in the weather
  • Fatigue
  • Heat
  • Cold
  • Electromagnetic Force (EMF’s)
  • Menstrual cycle

Exercise:
Some individuals have no problem with exercise but others may not be able to tolerate any type of exercise or very little exercise. This is called “exercise intolerance.” Episodes may develop soon after or the next day.
Rest after exercise: may set an episode into motion.

Unknown: One can follow all the rules and still have episodes for unknown reasons.

Over-the-counter medications:
Most over the counter medications, can set muscle weakness or paralysis into motion for people with Periodic Paralysis. The following is a list of some known offenders.

  • Eye drops
  • Glycerin enemas
  • NSAID’s
  • Cough syrups 
Compounds or Chemicals:
If the following ingredients are in any products you use…you should stop using them until you are sure they are not causing symptoms:
  • Sodium Hydroxide 
  •  Edetate Disodium
  • Stearic Acid

They may be in any of the following:
Lotions, oils, hair dyes or colors, antiperspirants, enemas, suppositories, soaps, shampoos, shaving creams, foams, toothpastes, deodorants, beauty products, skincare products, cosmetic products, bath salts, emollients, ointments, creams, hair sprays, perfumes, colognes, powders, hair gels, oils, tonics, mousse

Drugs:
Many, many drugs can set muscle weakness or paralysis into motion for people with Periodic Paralysis.

If one must take a drug, it is better to begin with ¼ of a normal dose to make sure it will work for you.

  • Saline drips, glucose Infusion: If an IV is needed, mannitol can be used(or diluted solutions in extreme cases)
  • Oral or Intravenous Corticosteroids
  • Muscle relaxers
  • Beta blockers
  • Tranquilizers
  • Pain killers (analgesics)
  • Antihistamines
  • Puffers for asthma
  • Antibiotics
  • Cough syrups
  • Eye drops to dilate eyes
  • Contrast dye for MRI’s
  • Lidocaine 
  •  Anesthetics
  • Epinephrine (Can sometimes help symptoms of Hyperkalemic Periodic Paralysis)
  • Adrenaline (Can sometimes help symptoms of Hyperkalemic Periodic Paralysis)

For more information about the medications or drugs which can cause muscle weakness, muscle paralysis, long QT interval hearts beats (ATS) and torsades de pointes (ATS), please go to:

http://www.periodicparalysisnetwork.com/pdf/What%20are%20the%20Periodic%20Paralysis%20Triggers.pdf

Until later...

Friday, June 19, 2015

Trying To Balance My Life-Periodic Paralysis! Guest Blog Article from Julie Nielsen Cabitto


Hello All,

One of our members wrote the following post and blog. I wanted to share it and Julie graciously gave her permission for it to be posted on our PPNI Blog. Thank you Julie for the kind words  and for sharing your story with you. We are so happy that we have been able to help you and your family.

Guest Blog Article from Julie Nielsen Cabitto

I wrote a blog post about my story w/ PP if anyone is interested. It is also a thank you to Susan Q Knittle Hunter for helping me understand better. I have worked on two family history blogs for awhile. A lot of friends asked me to start a blog about how I deal with day to day stuff with me & my kids having health problems. I recently started that blog. (Note: I do feel amateur) My health slowed me down from posting as often as I wished. No adds, just me sharing what people ask me a lot about. I will write a review on Amazon very soon for Susan's books. Here's the longer version to my friends, family & any of you wanting to see. (post today: 17 Jun 2015)


Wednesday, June 17, 2015
Trying to balance my life-Periodic Paralysis!

Throughout the last 2 years, whenever I had really bad days, I went to read stories or books about people with mobility handicaps. Especially paraplegics, because I often test paralyzed from the waist down. I don't read them to feel sorry for myself, or to convince myself it could be worse. I have only one motive: to look for ideas on how they adapted to life, to see how they accomplish day to day stuff. About 2 months ago on one of my really bad days, I saw a book about periodic paralysis, written by Susan Q. Knittle-Hunter and her husband Calvin Hunter. I was intrigued because my neurologist said 15 years ago my body looked and acted like Periodic Paralysis. It was the first thing my doctor suspected. He was very surprised when my potassium levels and EMG test were normal. So it was dismissed that I didn't have that. But I figured since my body was so similar to it, I might get some ideas. I downloaded the sample onto my kindle. I was so amazed, I knew I wanted to buy a copy! Usually I get my books on Kindle, but this time I wanted a paperback book to write in, notate and easily show my family. The first thing that amazed me, was Susan said many people have normal EMG's and normal potassium levels in between episodes. That was the only two reasons I wasn't diagnosed with it!

I spent a few days reading all I could in the book, on the website, and other websites. I watched videos of people having episodes. Their episodes all looked like mine! I decided I needed to compile some evidence to convince doctors. This is really rare, estimated 1 in 100,000, according to NIH. I thought of 8 ER/hospital visits that my potassium could have been really low, based on symptoms I was now realizing were related to severe K+ (potassium) deficiencies. I got back lab reports on 24 visits. The crazy thing is, my potassium was only checked during 2 hospital visits! My neurologist told me that because I'm considered a "neuro patient" with my complicated migraines, spasticity, mobility issues, had a TIA and probably have petite seizures, that my K+ should always be checked as a standard hospital lab. I created a chart with the date of all labs I had records for, the reason they were asked for, if they checked K+, and the K+ results. Out of 29 labs (during abt 15 years), my potassium was only checked 8 times! Three times by a doctor which K+ was a routine lab for him.  Of the 8 labs, half were low enough to be called hypokalemia (low potassium, 3.5 or lower). I also discovered that the DNA tests from places like Ancestry.com and 23andme have shown genetic mutations on a few known chromosomes for Periodic Paralysis. I ordered a test and recently got my results, showing I do have those same DNA markings. There is a 500$ genetic test, just for Periodic Paralysis, but I wasn't ready for that cost. (not covered by insurance)

My next bit of evidence was to do tracking. I charted how I felt for a month, and which neuro things were affected. I got some liquid ionic potassium, a bunch of avocados and sweet potatoes. (Which are quite high in K+.) The first day tracking, it was my second day of a bad migraine. That migraine caused me felt so sick with vertigo, nausea, my eyes were affected and my whole body ached as if I had the flu.  I saw a post on Susan's face book group. Someone posted the question "how much potassium do you take to fight migraines?" I could not believe this possibility even existed! I immediately ate a whole avocado (abt 975mg) and took 99mg of ionic potassium. Within 10 minutes I could feel my migraine stopping better and faster than any migraine med I'd ever tried! Twice more the symptoms started back up, so twice more I took 99 mg of potassium and ate potassium rich foods. The next morning after I woke up and stretched, my fingers and legs had twice the strength of the day before. Over the next month of testing, going by my feeling of symptoms, I found I averaged 500-600mg of liquid ionic K+, plus an avocado daily (raw, nothing on it, abt 975mg K+), and my neuro stuff stayed away. I could feel stuff start to flare 3-4 times a day, every day. But the symptoms always stopped within minutes of taking the K+. (A recent lab showed I was not taking too much K+, but rather I was finally getting balanced.)

Most of my life I've had severe allergies to many things. Since I was a teenager, if I tried to stop Allegra for more than 2 weeks I got a respiratory infection. I found that the two meds I took lowered K+ levels. I had just spoken to my doctor about stopping them because they didn't seem to be working anymore. He agreed it was safe to stop, so I did. I've also had severe vitamin deficiencies since I was young. I've been taking 10,000 IU of vitamin D3 daily but could not get above 25! I got several labs over the last 4 years to make sure I wasn't taking too much D.  I just kept showing up deficient in D as well as several other vitamins and minerals. I saw a gastro doctor who specialized in nutrition. She said my vitamin issues were much more than being celiac. Especially because I never cheated, and it's been over 5 years of no gluten in my system. She apologized for not being able to find the source of the absorption problem.

I recently saw my neurologist. I showed my lab summary sheet. He was amazed at my drastic improvement in only one month, that I stayed so well for a month and I went a whole month without migraines, a record for me! He ordered a slew of labs. He wanted to double check I was staying in safe range for K+ and not going high. My K+ was normal, and for the first time ever all my labs showed normal range, no deficiencies except B12! I was only taking magnesium, D and K+ at the time of the lab. (No other meds or supplements, taken for one month.) So for now it is believed by my doctor and I that I do have this. I meet all the criteria for it. My doctor said if I continue for another 6 months like this, and/or my DNA rest shows mutations for it, then I will have an official diagnosis. I'm feeling better than I have in over 20 years! My muscle weakness is almost completely gone. My finger tips have feeling in them again so I can get back to learning to play the violin. Pollens that normally do me in are out with a vengeance but my body doesn't seem to notice. My neuro vision problems are gone. All my neuro stuff has stopped. All my health problems have stopped for a month and a half now. (Except I know I am still celiac and can't eat a few foods for the rest of my life, and I'm good with that.) I never expected to feel this great! I don't feel handicapped anymore. And I am ready for adventures!

Periodic Paralysis is genetic. I think it just started with me. No one else in my family has had my crazy stuff. It's an ionic chanelopothy. My body does not process K+ correctly. When the potassium shifts, my muscles weaken or go paralyzed along with other neuro problems. When the K+ levels in my body gets corrected, (by supplying more K+) then the symptoms/problems stop. There are several variations of Periodic Paralysis. Some versions are symptoms with K+ getting too high. I've told my doctors for 15 years it's like a light switch being flipped on and off. One minute I can walk and the next I cannot. A lot of doctors have tested me and been amazed that one minute I have reflexes and the next I do not, until that episode ends. Now I know that "light switch" is potassium. I do feel the chemical shifts in my body when I get the right amount of potassium. It feels weird. I read that I have 50% chance of passing this on to my kids. I started symptoms when I was 18, with two episodes as a teenager. I'll be 40 in 2 months.  I'm glad I know now, to prevent my children from going through what I did.

I'm really thankful I found Susan's book! She has a book and workbook. I bought both and have been thrilled with how much I am learning from them. I'm thankful she has taken her experiences and tries to create awareness for this problem.  Yes I did the work, but I got the idea to ask for a re-evaluation from reading what Susan has written/writes. I am writing this post in case it helps to add awareness, because so little info is out there, even for specialists. Here is the book I bought, and the website with it that helped improve my life a lot! 


Julie’s Blog:
http://juliesimplifieslife.blogspot.com/2015/06/trying-to-balance-my-life-periodic.html



Until later…


Tuesday, June 16, 2015

Periodic Paralysis and Depression



One of our members asked about the possible connection between Periodic Paralysis and depression. This comes up occasionally, so I thought I would write a blog article about it.

My reply:

There are five possible answers or issues to consider about Periodic Paralysis and depression...... 

First:
We know that (low potassium) can/may create mental issues including depression (and possibly psychosis, hallucinations and delirium).

http://healthyeating.sfgate.com/psychological-effects-low...

http://www.livestrong.com/.../468486-brain-fog-and-a.../

Second:
There are mental issues which can accompany Andersen-Tawil Syndrome, a form of Periodic Paralysis:

"Disease characteristics.

Andersen-Tawil syndrome (referred to as ATS in this entry) is characterized by a triad of episodic flaccid muscle weakness (i.e., periodic paralysis), ventricular arrhythmias and prolonged QT interval, and anomalies such as low-set ears, ocular hypertelorism, small mandible, fifth-digit clinodactyly, syndactyly, short stature, and scoliosis. Affected individuals present in the first or second decade with either cardiac symptoms (palpitations and/or syncope) or weakness that occurs spontaneously following prolonged rest or following rest after exertion. Mild permanent weakness is common. Mild learning difficulties and a distinct neurocognitive phenotype (i.e., deficits in executive function and abstract reasoning) have been described.
www.ncbi.nlm.nih.gov/pubmed/20301441 "

"Executive Functioning (EF) Disorder
Relates to difficulty in self regulation, organizing, integration, or high order reasoning skills. "Executive Function disorder, is a disability of not being able to show what you know" Executive Function disorder is associated with many disabilities: Attention Deficit Hyperactivity Disorder (AD/HD), Learning Disabilities (LD), Tourette Syndrome (TS), Obsessive Compulsive Disorder (OCD), Autism, Depression, Bipolar, etc."
http://concordspedpac.org/ExecutiveFunctions.html

Third:
Co-morbidity: We can all have more than one medical issue co-existing with our Periodic Paralysis.

From our book:
The Periodic Paralysis Guide And Workbook:
Be The Best You Can Be Naturally (pages 35 and 36)


"Co-Existing Conditions

The term ‘co-existing conditions’ also known as ‘co-morbidity’ means having more than one medical condition, illness or disease at the same time. Last year we prepared and executed a comprehensive four-part informal survey of the members of our Periodic Paralysis Network Support Group and received a great deal of important and surprising information. We discovered that most of our members had more than just the common symptoms of Periodic Paralysis. Many of them, whether they were diagnosed with a form of Periodic Paralysis or not, had at least one more other diagnosed condition. Most had several, and a few had as many as fifteen other diagnosed diseases, conditions or types of medical dysfunction. The following is the list of conditions reported:

Cyclic vomiting syndrome, high cholesterol, diabetes type 2, peripheral polyneuropathy, arachnoids cysts in the brain, loss of peripheral vision, poly cystic ovarian disease, migraines, osteoporosis (bone crush stage in spine and hips), spina bifida oculta, small brain ischemia, intolerance to most medications, paradoxical effect to most medications, hypoglycemia, intolerance to anesthesia, cataracts, costochondritis, gluten intolerance, fibrocystic disease, esophageal reflux, esophageal hernia, diverticulitis, hearing loss, lactic acidosis, metabolic acidosis, hypoxemia, (low blood oxygen), restless leg syndrome, stress fracture of the foot, neuroma (nerve tumor) in both feet, painful and tight calf muscles, fibroid tumor (uterus), ovarian cysts, chronic bladder infections, extremely dry skin, GERD, weak eye muscles, fasciculation, temporomandibular disorders, reflex sympathetic dystrophy, cervical and uterine cancer, uterine and ovarian cysts, vertigo, high clotting, blood clots, asthma, low set, hyper mobile joints, gastritis, syncope, muscle spasms, depression, obsessive compulsive disorder, memory loss (short term), chronic fatigue, edema, unnamed lumps in breasts, herpes simplex A (lips-cold sores), gastro paresis, myalgia, myositis, osteoarthritis, myoclonic jerks, dysphagia (trouble swallowing), lumbar spinal stenosis, many cysts, fatty tumors, hyperthyroid, clotting disorder, memory deficit, compressed pituitary, kidney cyst, allergies, goiter, hardening of the arteries in legs, trouble climbing stairs, low platelet count, mastectomy and hysterectomy, straight spine, vertigo, tinnitus, atrial septal defect, complete heart block, scoliosis, pitting edema, thyroid hormone resistance disease, seizures, cluster headaches, severe sleep apnea, rectocele, pulmonary hypertension, candida, acute pancreatitis, chronic pancreatitis, poorly distended bladder, Barrett’s esophagus, heart attack, gall bladder issues, carpal tunnel, exercise intolerance, kidney stones, degenerative disk disease, Ehlers-Danlos Syndrome, fibromyalgia, interstitial cystitis, Sjogrens Syndrome, LUPUS, Charcot-Marie Tooth.

Fourth:
Who would not be depressed when you are sick, ill, in pain, and/or too weak to do anything and not being believed?

Fifth: Any drugs being given for the depression, may/could be aggravating the issue if an individual has PP...


I hope this is helpful!!!


Until later...

Sunday, June 14, 2015

Over 400 Members!!!!!



Congratulations to us all at the Periodic Paralysis Network Support, Education and Advocacy Group!!! We now have over 400 members!!!!!!!! Thank you all for your support!!!

Our PPN Forum:

The following are the services and features of our PPN forum:

PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

PPN Website: www.periodicparalysisnetwork.com

PPN Books: "Living With Periodic Paralysis: The Mystery Unraveled" and "The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
(Found on our website http://www.periodicparalysisnetwork.com/books.htm)

PPN Blog: http://livingwithperiodicparalysis.blogspot.com/

PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/

The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/

PPN Genealogy-Genetic Discussion Group:
https://www.facebook.com/groups/580168915344191/

PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork

PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor

Email: periodicparalysisnetwork@gmail.com

Please check out our PPN Members World Map: http://www.multiplottr.com/?map_id=55083

Monday, April 6, 2015

Doctors Not Being Held Accountable: The Periodic Paralysis Diagnosis By Guest Blogger Maureen McCutcheon


Hello All,

The topic of seeking a diagnosis and being abused by doctors in the process, appears nearly daily on our PPN Support Group. Almost every new member has a horror story to relate of their past battles and/or their on-going battle as they traverse across and through the 'diagnosis nightmare highway' lasting sometimes decades, and leaving individuals in a 'diagnosis limbo' at the hands of fallible doctors inflicting pain and damage through disrespectful and discriminatory actions and dis-action.

Maureen has written another great article on this topic for us...Thank you.

Doctors Not Being Held Accountable
The Periodic Paralysis Diagnosis

By Guest Blogger Maureen McCutcheon

The Medical Community is aware that tests and imaging and interpretation of tests and imaging, are fallible and have proven to provide incorrect, false, misleading, inaccurate and/or missed data and information.  The medical community is aware of this and  that this may be due to several factors that have proven  the limitations of technical equipment to always provide accurate information.  And people are fallible. People performing the test may not have been conscientious or have insufficient experience or the person (even 'specialists') interpreting the data, misreads or just 'misses' that can result from and in factors such as writing and reading the report, handling/mis-handling either or both the patient and testing equipment, image, or lab product. The condition of the patient can hinder obtaining results/image or variable factors/conditions that can influence the outcome of the image or testing. Or may not able to 'catch' abnormality at time of test, imaging or study.

Though a doctor may say that a test is "not showing anything wrong" or all is "normal," it doesn't mean nothing is wrong. It can mean that the test/imaging that doesn't reveal 'abnormal' that seems 'normal' or 'nothing wrong' isn't revealing the abnormality at that time so result isn't giving accurate info. It may be that test isn't adequate for any number of reasons to reveal and help to identify/recognize what is causing symptoms. Or as we know from experience, the doctor has inadequate or inaccurate information that would to facilitate accurate diagnosis (and doctor doesn't know enough to question or know that they don't have accurate information). This may result in mistaken diagnosis or treatment or no treatment. That may be a form of malpractice more than discrimination. But mal-practice tends to lend itself to being a co-factor/co-condition with discrimination and forms of abuse that could be considered forms of medical abuse that is discriminatory because it tends to be directed towards those who are disabled with rare conditions who physicians discount and use hostile attitudes behavior that they would not or don't use with people/patients who have common, familiar conditions that physicians are comfortable with because they can readily give a diagnosis to.
NOT addressing malpractice. The Human Rights we are addressing as ‘discriminatory’ is behavior expressed by attitudes, actions and being treated differently and denied equal treatment by some in the medical community towards many of those who are disabled by physical incapacitation due to rare and hard to diagnose disorders. (This kind of mistreatment probably is also exhibited towards those with some mental compromise/capacity) There are too many examples of the medical community not being held accountable and allowing themselves/each other to behave in discriminatory manner towards those disabled by rare health conditions. This isn't about having a doctor  'dismiss' person who is having physical symptoms/dysfunction without being able to identify the cause other than to say that since "can't find anything wrong to explain symptoms" (despite significant signs that something is wrong and not normal) or discharging from the ER because in their opinion they feel they've adequately ruled out imminent life-threatening (primarily stroke/heart attack). The form of Human Rights discrimination that we are concerned about is focused on the both the intentional use of behavior/attitudes/actions by some doctors and others in medical community towards those disabled by conditions that due to being rare seem to mistreated and are not being treated with dignity, respect and are given a different quality of CARING being extended to those with what doctors must believe have a 'real' condition because they have a 'real' diagnosis.

Physicians can also too easily use explanation/label from a psychological perspective that they should not be able to use without proving they've ruled out everything else. (How can they with over 6 or 7 thousand rare diseases/disorders?). However, that still should not be reason for a doctor to behave in some of the despicable, horrific behaviors they aren't being held accountable for that is being disrespectful and discriminatory. And it is dishonorable to their profession. 



Until later...

Tuesday, March 24, 2015

375 Members!!!



Congratulations to us all at the Periodic Paralysis Network Support, Education and Advocacy Group!!! We now have over 375 members!!!!!!!! Thank you all for your support!!!

Our PPN Forum:

The following are the services and features of our PPN forum:

PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

PPN Website: www.periodicparalysisnetwork.com

PPN Books: "Living With Periodic Paralysis: The Mystery Unraveled" and "The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
(Found on our website http://www.periodicparalysisnetwork.com/books.htm)

PPN Blog: http://livingwithperiodicparalysis.blogspot.com/

PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/

The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/

PPN Genealogy-Genetic Discussion Group:
https://www.facebook.com/groups/580168915344191/

PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork

PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor

Email: periodicparalysisnetwork@gmail.com

Please check out our PPN Members World Map: http://www.multiplottr.com/?map_id=55083

Saturday, March 21, 2015

A Poor 'Product' That is Being Called 'Medical Care': By Maureen McCutcheon


A Poor 'Product' That is Being Called 'Medical Care': By Maureen McCutcheon

It has happened again…another misinformed and arrogant neurologist is denying a diagnosis to one of our new members based on old, outdated and/or misinterpreted information. He believes that potassium levels must be 2.1 or lower in order to qualify for a diagnosis of Hypokalemic Periodic Paralysis. This is so ludicrous that it is laughable!!!!

In response, Maureen, one of our members wrote the following:

"We are not expecting doctors to KNOW everything. There is too much to know and more to know than they or anyone can even wonder about or what it is they do not know TO KNOW... BUT, it is not unrealistic to expect that they will not act like they know everything! And that they will be willing to admit they cannot KNOW everything (especially when there are over six or seven thousand known rare disorders) and over and over in text books I have read the words, "we don't understand,", or "we don't know," or "we can't explain why this is, but ... ")

I have read comments like this in textbooks about conditions as common and well-researched as diabetes and other well-known conditions that are not rare. I wish they would just to be willing to use the ability they must have to learn, that they have proven they have, by going through medical school and all the rigors and requirements to become a physician. I wish they would use that ability to think, learn and attain knowledge ( if the ability to think has not been beaten out of them by the current push to use 'pathway' thinking and cookie-cutter 'follow recipe' protocols that can have a place as a FOUNDATION to start and incorporate in the search for a diagnosis, but not to end there) then dr's need to stop following the recipe of 'standard protocol' (which includes the easy of the use of 'psychological' and labels like somatorform, conversion, etc.).

Standard of care and protocol has a place in medical care. It has some value. But people ARE NOT factory made machines. When the protocol is hindering rather than facilitating the real purpose of the physician (which is to seek accurate diagnosis so can provide care that is best fit for the patient), that ties their hands and makes them afraid to 'change the recipe', that facilitates and forces doctors to use a 'bad' recipe and actually encourage them to 'discard/ 'throw out' the patient rather than throw out the 'bad recipe'.

A chef will throw out a bad recipe. A quality chef will be able to tell the recipe will be bad even before starting it, so they will not even waste their time and ingredients. Doctors need to be able to be like the chef who knows to throw out the 'bad recipe' or decide that if they are required to use it, that they will improve upon it in a 'creative' way. But doctors seem to be hindered, even 'punished' for trying to 'change the recipe', even if it results in a poor 'product' that is being called 'medical care'..."

Thank you Maureen!!

Until later…

Wednesday, March 18, 2015

How To Get A Periodic Paralysis Diagnosis: “Hit Them Between The Eyes With The Facts”





How To Get A Periodic Paralysis Diagnosis: “Hit Them Between The Eyes With The Facts”

I realized last night that I have not written a blog on this very important subject. Getting a diagnosis is one of the most discussed subjects on our PPNI Support, Education and Advocacy Group. I have written many articles about the diagnosis and the many and complicated issues related to it, but I have neglected to write one with the actual plan or steps one can follow. I have however, written two books in which I cover this subject at length. They are "Living With Periodic Paralysis: The Mystery Unraveled"  and "The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally." In fact the second book was, in part, actually created to be used as a tool to aid in getting a diagnosis.

Written in the “Introduction” of the front matter of the book is the following, which includes the “plan” for seeking and obtaining a diagnosis:

”It is a user-friendly guide, a set of plans, instructions and ideas for aiding individuals with all forms of Periodic Paralysis, to better manage their symptoms in natural and common sense methods. It is a workbook with a set of tools such as charts, forms and even a medical journal, with clear instructions for completing and using them. Each is designed to be individualized and may be utilized for the various plans or sections of the book. The charts and forms may be scanned and used separately or the pages may simply be completed in the book itself for keeping all medical information in one place. Easily transportable, this book is also a handbook and can accompany each visit to doctor appointments, the ER or the hospital. This guide may stand-alone or may be used in conjunction with the first book about Periodic Paralysis, living with Periodic Paralysis: The Mystery Unraveled. This guide, workbook and handbook is designed to assist individuals with all forms of Periodic Paralysis to ‘be the best they can be naturally.’”

This is the Outline for the Plan:
(From the book)

Getting a Clinical Diagnosis
The Plan

Process of elimination
Gather the facts
Lab work
Periods of paralysis, documented
EKGs
Oximeter recordings
Genetic testing?
Previous medical records
Chart the triggers
Document potassium use
Gather and chart family information

Introduction:

There are two methods used for diagnosis of the various types of Periodic Paralysis; one is through a genetic test, which studies one's DNA. If a mutation is found the person receives a "genetic" diagnosis. If a person is diagnosed based on their symptoms, once all else has been ruled out, it is called a "clinical" diagnosis. Too many doctors will not give a clinical diagnosis once everything else has been ruled out and are eager to diagnose a person, especially women, with a mental disorder such as "conversion disorder" and then prescribe a psychotropic medication which makes the symptoms worse or can actually kill someone with certain forms of PP.

The
truth about the genetic mutations for Periodic Paralysis and Andersen-Tawil Syndrome:

More than 40% of all individuals with Periodic Paralysis have a form, which has not yet been discovered and must therefore, be diagnosed clinically, based on symptoms and characteristics.

The other issue is that up to 50% of those with PP have potassium shifting in normal ranges, rather than low or high, which causes their symptoms. Without a test proving low or high potassium, some uniformed doctors refuse to diagnose although everything else is ruled out and there are clearly periods of muscle weakness and/or paralysis.
It is my belief that too much emphasis is placed upon the genetic testing, because only about one half us will have a genetic mutation if we are tested genetically. Diagnosis needs to be based on symptoms and characteristic once all else is ruled out.

Getting a clinical diagnosis, based on our symptoms, is the most important step we can take. Once it is on paper, we are at least believed for emergency care issues, hospitalizations, possible medications, school issues for children, insurance, validation, vindication, disability and much more.

It is an individual decision to do genetic testing once one has a clinical diagnosis and best made knowing all of the facts.

The Plan

Before I had a diagnosis and I was very ill, Calvin was beside himself with worry because of the severe paralytic episodes I was experiencing four and five times a day and every night. I was having difficulty breathing during them. He met with a technician for medical equipment when we were trying to get oxygen and he told her the story. She told him the best way to get the help we needed and a diagnosis was to, “Hit them (doctors) between the eyes with the facts.” That is just what we did!! Based on that idea I have created the plan for others to use to gain a diagnosis. It is presented in an outline format to make it easy to follow and to use as a checklist.
~~~~~~~~~~~~~~~~

You must gather all of the facts:
Ø       It is important for everything else to be ruled out. Your PCP and a neurologist do these, because most of the symptoms resemble neuromuscular disorders. The tests ruling everything else out might include but are not limited to:
§         Lab work of all types,
·         Blood
·         Urine
§         MRI's,
·         Brain
·         Spine
§         Spinal taps,
§         X-rays
§         EEGs
§         EMGs
§         EKGs
§         CMAPs
§         Muscle biopsy
(Some of the tests above may show changes that can be markers for PP).
v      Most doctors diagnosing PP want lab work showing either:
Ø       Paralysis during shifting in normal ranges
Ø       Paralysis during shifting in low potassium and/or,
Ø       Paralysis during shifting high potassium
§         This is done by obtaining serum potassium levels
·         May need to be done several times until a baseline is established
·         Then during episodes every 5 to 10 minutes...not just one blood draw...there is no way to see the shifting otherwise.
·         It may be necessary for hospitalization in order to do this while in the paralysis.
·         May need to be done for more than 24 hours until each is documented, during the episodes.
·         If the shifting is in the normal ranges, it may never show up during tests, unless it is done every few minutes.
¨        50% of PP patients may not have potassium shifting out of normal ranges
¨       ATS patients may shift all three ways.
Ø       However, the latest information for diagnosing PP based on potassium levels in blood serum is as follows:
§         The potassium in the blood does not always shift above or below normal ranges in 50% of patients experiencing muscle weakness or paralysis or it shifts so quickly that it cannot be measured. Doctors need to diagnose a patient with Periodic Paralysis based on the patient’s symptoms, specifically, heart symptoms on an EKG and the muscle strength or weakness and history of episodes of paralysis.
Ø       *** The information above needs to be shared with your doctors. Most do not understand these concepts. ***
v      There needs to be periods of paralysis, either total or partial, which can be documented (or progressive, gradual, fixed muscle weakness, all other things ruled out).
Ø       Videotaping is the best way to do this.
Ø       It may be necessary for hospitalization in order for doctors to see an individual while in the paralysis.

Warning!
Under no circumstances should an individual provoke his or her symptoms or an episode of paralysis by omitting medication or ingesting foods or perform activities, which are known triggers. This is a very serious thing to do and can lead to death. Please read Chapter Twenty-Nine for more information on this subject.

v      ECGs or EKGs consistent with "ion channelopathy", Periodic Paralysis or Andersen Tawil Syndrome. For specifics see Heart Issues in Chapter Nineteen.
Ø       Needs to be done while in the paralysis so it may need to be done for more than 24 hours until each is documented, during the episodes.
§         Holter Heart Monitors are the best method.
v      Oximeter (oxygen) recordings
Ø       Indicating, levels dropping during paralysis.
Ø       If in an advanced case of PP, it may show hypoventilation.
v      Genetic testing is available
Ø       Not necessary, but helpful for treatment and prognosis
Ø       See below for Specifics for Genetic Diagnosing of PP
§         30% of all people with PP do not have identified mutations.
Ø       See below for Specifics for Genetic Diagnosing of ATS
§         30% - 40 % of all people with ATS do not have identified mutations.
v      Gather all previous medical records.
Ø       Be sure to ask for all doctors' records from each appointment you attend.
Ø       Get all lab records, x-rays, hospitalizations, etc.
v      Chart the triggers for the episodes.
Ø       See “Triggers” in Chapter Seventeen and “Discovering Your Triggers” in Chapter Twenty-Two”
Ø       Documenting an increase of episodes after eating carbohydrates or red meat, after exercising or after taking certain medications is important for being able to control the episodes and letting the doctor see what the triggers are for a diagnosis.
v      Documenting a reduction of episodes when using potassium is good. This can indicate the loss of potassium after shifting and may indicate low potassium levels.
v      Gather a team of doctors. (Knowledgeable about PP or willing to learn)
Ø       PCP
Ø       Neurologist
Ø       Electrocardiologist
Ø       Nephrologist
Ø       Endocrinologist
Ø       Counselor or therapist
Ø       Others as needed for symptoms
Ø       MDA doctors if possible
v      Gather as much medical information as possible from family members who may have symptoms similar to Periodic Paralysis. It has a hereditary component.
Ø       If one suspects Andersen-Tawil Syndrome, gather as much medical information as possible from family members and note the characteristics/symptoms. Create a family flowchart with this information. Adding pictures can be helpful in demonstrating the characteristics.


Each of the steps outlined above is further discussed and explained in detail in the books.

The bottom line is that the best way to get a diagnosis is to get as much information together as possible to prove your case. Video tape the episodes, keep a journal, put together a notebook with all of the testing results. Include ER visit reports, hospital records, doctors notes, records of your vitals, and more depending on your symptoms and your particular case. Both books have charts, forms and more to use for this purpose, including all the instructions.

Once you have all of the information together, you can:
“HIT THEM BETWEEN THE EYES WITH THE FACTS!”


"Living With Periodic Paralysis: The Mystery Unraveled"
https://www.createspace.com/4111713

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"