Serene Forest

Tuesday, December 31, 2013

Happy New Year!!!! December 31, 2013

Hello All!!!!

It is difficult to be positive all the time when living with the reality of this condition called Periodic Paralysis. But, we must maintain hope for the fresh and bright coming New Year that the medical professionals we deal with will
receive better information and more awareness and education about Periodic Paralysis, that they will understand Periodic Paralysis, and that they will learn to recognize Periodic Paralysis , diagnose Periodic Paralysis and treat those of us with Periodic Paralysis properly. We must also maintain hope that through our own efforts we can continue to help and support each other as we share our experiences and the things we learn together!!!!  Calvin and I want to wish you all a Healthy and Happy New Year in 2014!!!!

Sunday, December 29, 2013

Monitoring Vital Signs For Individuals With Periodic Paralysis

 Monitoring Vital Signs For Individuals With Periodic Paralysis

This morning, one of our Support Group members told us that she has ordered a potassium reader as a Christmas present to herself. She is assembling an “emergency kit.” Having several medical devices gathered for use during paralytic episodes is an important issue for individuals with Periodic Paralysis, their family members and/or caregivers. It is essential to have everything ready when needed. Taking the "guessing" or the "unknown" out of the equation makes a very big difference for everyone concerned.
As I discussed in some of my previous blogs, Periodic Paralysis (PP) is a very rare mineral metabolic disorder. Individuals with various forms of PP suffer the effects of partial or full body muscle weakness or paralysis, which may be accompanied by very serious symptoms.
On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to monitor the vitals of the individual during an episode.

Monitoring the vital signs diligently is the most important way to manage the serious complications. Most people in full body paralysis are unable to describe how they are feeling or what is happening to them, so there is only one way for sure to know how the body is functioning; using medical devices to measure things such as oxygen level, body temperature, blood pressure, heart and breathing rates, potassium levels, pH levels and blood sugar levels. If someone can describe how they are feeling, it is still impossible to know what is going on inside the body on a cellular level. It can be unsafe to make decisions about interventions without the correct information. Guessing about the intervention could trigger serious and/or life-threatening conditions. Avoiding calling for an ambulance every time a paralytic episode occurs, is another benefit to being prepared with a collection of medical devices for measuring vital signs. Going to the hospital is stressful, expensive and unnecessary in most cases, as well as possibly life-threatening if the medical professionals are not familiar with Periodic Paralysis.

Several pieces of medical equipment can be very handy for measuring your vitals. These include: a potassium meter, a finger pulse oximeter, blood sugar monitor, stethoscope or EMAY handheld heart monitor, wrist blood pressure monitor, a thermometer and pH test paper strips. These items are necessary for caregivers to monitor vitals primarily because the person in paralysis is unable to communicate. The vitals serve as the communication tool. Keeping written records is very important especially when making connections between individual events.

The same holds true for the measurement and recording of other vitals such as blood pressure, temperature, blood sugar levels, oxygen levels, respiration, heart rate and the input and output of fluids.

Potassium Meter

There are two types of potassium meters, however, one has been discontinued. Neither one is a medical device. This means medical insurance will not pay for them and they are very expensive. The newest one is easier to use but costs about $350.00. It measures the potassium level in either the blood or the saliva. Using one of these little devices will give one a baseline for their normal levels and for when their potassium is high or low. We now know that most of us who have various forms of Periodic Paralysis have our own level of normal and our own unique level of what is high or low for us as an individual. Keeping record of our findings is very important. Although not recognized by many doctors, some are willing to recognize their worth and rely on the findings. During an episode, one’s potassium levels can be checked as often as possible or needed. Caregivers can decide how to proceed if the levels are too high or too low.

Digital Oximeter

The digital oximeter is a small and inexpensive device, which is placed on the tip of a finger. It reads the oxygen level in our blood. This is important, because when in paralysis, our oxygen levels may drop. If oxygen levels dip too low and oxygen is not handy, it can indicate that an ambulance may need to be called. The device also displays the heart rate. The caregivers will know if the patient is in tachycardia (fast) or bradycardia (slow) heart rate. The intensity of the heartbeat is also displayed and can indicate arrhythmia (irregular heart beat).

test paper strips

Because Periodic Paralysis is a mineral metabolic disorder, individuals with PP are prone to developing metabolic acidosis (too much acidity) or metabolic alkalosis (too much alkalinity) in their blood. These are serious conditions and can be life threatening. These paper strips easily and quickly measure for pH imbalance.

Blood Sugar/Glucose Meter

These devices are readily available. Though used normally for individuals with diabetes or hypoglycemia, the meters are important devices for those with PP. Having high sugar levels may trigger an episode. When the body stresses during an episode, sugar levels may rise. If the sugar moves with the potassium, it may cause pain. The stick for pricking the finger may also be used with the potassium reader.

Wrist Blood Pressure Cuff

Knowing the patients blood pressure is extremely important. The levels may get dangerously low or high and indicate the need for an ambulance. These devices also display the heart rate and arrhythmia. Having it on the wrist is so much easier than trying to use the older methods and tools for measuring blood pressure.

Digital Thermometer

The digital thermometer, which can be used in the ear, is a good choice. It is easy and quick to use. If someone with PP has an infection in his or her body, this can trigger an episode. This information may be useful to the caregiver.

Stethoscope or EMAY Heart Monitor

Due to the serious nature of irregular heartbeats, a stethoscope can be an important tool to have handy. If the wrist blood pressure cuff or the digital oximeter indicates irregular heartbeats, the caregiver can then listen to try to detect them and decide how serious they may be. without experience in recognizing arrhythmia, a new handheld heart monitor made by EMAY is a nice option with quick and easy results instantly. They are quite reasonable in cost at under $100.00.

With all of the tools in place and diligently recording the results, there is no more guessing. The caregivers are informed and can easily relax knowing precisely what is happening. As they take the measurements and record the results, they can tell the patient exactly what is happening. The patient can then relax, knowing they are out of danger. If, on the other hand, the results indicate an emergency situation, an ambulance can be called or the caregiver will know what to do and the patient will know that help is on the way. In conclusion, taking the "guessing" or the "unknown" out of the equation makes a very big difference for everyone concerned.

Video: (Older video)

Please click on the pictures below for more information about each device:

Horiba Potassium Meter: Expensive (about $350.00), but easy to use and helpful for knowing your exact potassium level at any given moment.

Blood Pressure Cuff: This is the one I use. It is in sync with the doctor and my oximeter.

Finger Oximeter: These can be anywhere from $15.00 up...

Urine and Saliva pH test paper: These are only about $8.00

Handheld Heart Monitor: EMAY Handheld Heart Monitor: About $79.00 (**Brand new item...very easy to use!!)

Information added and modified August 1, 2020. 

Until later…

Friday, December 27, 2013

Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).

Hello All,

I hope everyone who celebrates it had a wonderful Christmas. I suspect that like me, many of you spent some time in paralysis over the past few days. I was in full-body paralysis for over three hours on Christmas Day and spent the past few days in a very weakened state. Today, I am somewhat well enough to write again and post this blog, a very important and necessary issue to those of us with Periodic Paralysis.

Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).

Yesterday, I saw a post on Facebook from England.  It read “Did you know? Hospitals in the United States charge up to $800 for an IV bag of sterile salt water. Average manufacturer price? About $1.”
I immediately posted this on our Periodic Paralysis Support Group. With the following comment:
”Part of the problem with our medical system!!!! Not only that, for some people with Periodic Paralysis, an IV of sodium infused water (sterile salt (sodium or saline) water or glucose or dextrose water) worth only $1.00 but costing insurance $800.00 can make us worse or kill us...So we are being charged $799.00 over cost to be made worse or to be killed!!!”
I thought that all of our members knew about the issues we face with intravenous therapy, known as IVs, but one of our newer members was shocked to see my post. He did not know about this, but knew that he has horrible issues with IVs. It seems that with every hospitalization he fights the medical professionals over this issue. He pleads with them to not give him sodium IVs because of the horrible things they do to him. Apparently, he has lost the battle each time and he has been forced to endure the horrible effects of severe, full-body paralysis and pain, heart arrhythmia, blood pressure fluctuation, choking, damage to his organs and the risk of possible death. The stress involved in such a situation makes the attack worse and the fear one experiences during such horrible episode are beyond description. That he must endure it at all is inexcusable and unconscionable.

He requested information from me that he could take to his hospital to provide them with the facts. The following are quotes and links to websites with the information about using IVs with patients with various forms of Periodic Paralysis. My own story is included:

Intravenous potassium should be avoided whenever possible; however, if it is indicated for arrhythmia due to hypokalemia or airway compromise due to ictal dysphagia or accessory respiratory muscle paralysis. Mannitol (which is inert) should be used as the solvent (rather than saline or dextrose, which are both potential triggers of attacks) [5].

For Hypokalemic Periodic Paralysis: "Intravenous potassium is reserved for cardiac arrhythmia or airway compromise due to ictal dysphagia or accessory respiratory muscle paralysis. IV potassium chloride 0.05-0.1 mEq/kg body weight in 5% mannitol as a bolus is preferable to continuous infusion. Mannitol should be used as solvent, as both sodium and dextrose worsen the attack. Only 10 mEq at a time should be infused with intervals of 20-60 minutes, unless in situations of cardiac arrhythmia or respiratory compromise. This is to avoid hyperkalemia at the end of an attack with shift of potassium from intracellular compartment into the blood. Continuous ECG monitoring and sequential serum potassium measurements are mandatory."

Mannitol (which is inert) should be used as the solvent (rather than saline or dextrose, which are both potential triggers of attacks) [5].

"Salt: One of the most potent triggers of hypokalemic periodic paralysis is consumption of sodium chloride. The salt effect is far less known than the carbohydrate trigger, and many articles on hypokalemic periodic paralysis don't even mention this trigger. For many people it is easier to reduce salt than it is to reduce carbohydrates. "

Only as needed to administer IV KCL in mannitol or normal saline (5% glucose IV may worsen situation) or IV propranolol (see below) (1,4,10)[C]

Because of the rarity of the condition, perinatal experience with FHPP is limited (14,15). General anesthesia, postoperative stress, glucose-containing IV solutions, and long-acting neuromuscular blockers are associated with postoperative paralytic episodes.

Glucose-containing intravenous fluids should not be used in patients with hypokalemic paralysis, whereas such solutions may benefit patients with hyperkalemic and normokalemic paralysis (see above).

"Intravenous potassium in 5% mannitol was associated with a rise in potassium and improvement in strength. This study confirms the hazard of using glucose-containing solutions for correction of hypokalemia."

"When treating significant hypokalemia with IV potassium replacement, initial therapy should consist of potassium administered in glucose-free solutions. Glucose may cause a further decrease in the serum potassium concentration, presumably caused by the enhanced insulin secretion stimulated by glucose, which results in the movement of potassium into cells. This has been documented to precipitate arrhythmias and neuromuscular paralysis (1,2)."

You will find a great deal of information at this link on our website and in the links that follow:

On four different occasions I rode in an ambulance to the hospital due to symptoms of Periodic Paralysis, however, at the time I had no idea what was wrong. It was very frightening. Calvin and I assumed the problem was my heart because of the tachycardia and chest pain involved. On one of the occasions, total paralysis was also involved as well as muscle contractions throughout my body that made it look like seizures. During that trip, one of the EMTs gave me some glucose by mouth. He told me I was hypoglycemic. Within a few minutes, my body was jerking, 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.

On the other three trips I did not get the glucose. The ambulance was called due to total paralysis and tachycardia. On all four occasions, I was hooked up with an IV as I lay in the ambulance in the driveway. We sat there for quite awhile before we left for the hospital. It was a long, slow drive to the hospital because we lived in the mountains about 10 miles outside of town. I arrived at the hospital in worse condition than when I left my home. It was not until I realized I had Periodic Paralysis and began to study everything I could about the condition that I discovered why this happened.

I should never have been given IV’s of glucose, dextrose, sodium or saline. Apparently, the IVs had worsened my condition on each occasion.

My own diagnosis for a variant of Andersen-Tawil Syndrome, the most rare form of Periodic Paralysis, came after the doctors saw my severe reaction of full-body paralysis accompanied by long QT heartbeats, other arrhythmia, tachycardia, high blood pressure, choking and more from the use of a saline drip during and after the simple procedure to insert a heart loop monitor under the skin in my chest after I had told them not to. The medical professionals stood by helplessly observing for nearly two hours and did listen to my husband to not give me any more IVs or medication. 

It is imperative for one with Periodic Paralysis to know the above information and to have this important information written and handy in case an ambulance must be called. I keep this information in a plastic folder along with everything I know is important and that the paramedics must know when coming to my aid in an emergency. I approach it as if I will have no one with me to explain my needs. I keep it near the door and take it with me when I leave home.

Due to the previous mishaps, I have taken time to call my ambulance company and explained my condition to them, so they will understand ahead of time and be ready to assist me appropriately. At first, the person I talked to began to laugh at me and scoff about my calling with information ahead of time. She said it was not necessary for them to know anything before the ambulance is called. I began to cry in frustration and told her that she could laugh and scoff if she wanted to, but she had better pay attention to what I was saying. I told her I had a very rare condition and I had some very serious health issues that required special attention. I told her if I was not treated appropriately, I could die.

She got very quiet and serious and then began to ask me questions. After listening to my answers and the other information I offered, she told me she would have a meeting with the paramedics and EMTs and train them about Periodic Paralysis: Andersen-Tawil Syndrome and my special needs and what to do when they get a call to help me. I told her to instruct them to look at my file and listen to my husband’s instructions. He will know my potassium levels (we have a potassium meter) and they had to trust what he says.

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 should look through the folder for any other info they may need before reaching the hospital.

Since that time, we have had to call for an ambulance. They followed the instructions and all went well.”

We are living in the year 2017, nearly 2018, not the dark ages. No one should have to endure the effects of the wrong medications or treatments from the medical professionals whom we seek out for help. All medical professionals need to be trained about Periodic Paralysis and the correct ways to recognize our symptoms and treat us appropriately and at the very least, LISTEN to us when we are in need of your help. No one with any form of Periodic Paralysis should be forced into full-body paralysis and pain, heart arrhythmia, blood pressure fluctuation, choking, damage to his or her organs and the risk of possible death. No one should have to experience more stress in such a situation, which, makes the makes the attack worse, and the fear of dying while unable to move in any way or cry out for help. This is archaic, inexcusable and unconscionable.

Until later...

Saturday, December 21, 2013

Why We Should NOT TAKE DRUGS: Idiosyncratic and Paradoxical Reactions To Drugs

Good Morning All!

Here on the Olympic Peninsula we woke up to a winter wonderland!! It does not happen here very often, so it is a treat, especially a few days before Christmas. I think we can be assured of a White Christmas now!!! It is still snowing as I write, so I do not know how much we will get but we have a good two inches right now.

Yesterday, after my really good day on Wednesday, I had a bad afternoon and evening. Calvin made us a pot of beef vegetable soup!! Over the past five years he has learned to cook as I have given him directions from my recliner. He has now graduated to creating his own dishes and even bakes cookies for us (sugar free and gluten free).

He keeps busy during the winter months with his own writing (about ready to publish his new book) and working on the finish work of our renovated home. He has done a beautiful job. We are very comfortable.

Today I will write about the strange effects resulting from medications to people with various forms of Periodic Paralysis.
Idiosyncratic Reaction To Drugs

The two most common issues with drugs or pharmaceuticals for individuals with Periodic Paralysis (and others) are a paradoxical reaction and an idiosyncratic reaction. These are both serious effects. If one has a paradoxical reaction to a medication it means that the opposite of what is supposed to happen will occur. For instance, if someone takes a sleeping pill and then stays awake all night, it is known as a paradoxical effect. This can be just an inconvenience or very serious depending on the medical issue and the reaction. If someone who is already experiencing high blood pressure, is prescribed a drug to lower blood pressure, but it increases the blood pressure, this can cause a stroke, other serious effects or even death.

If an individual develops tremors, metabolic acidosis and paralysis from taking an antibiotic; these would be considered as idiosyncratic effects; reactions or side effects, which would be totally unpredicted, unexpected and never seen before. These effects would not be listed as possible rare side effects. This is a serious problem because these idiosyncratic effects, also known as “type B reaction” can be harmful by causing damage or even death. The amount ingested has no bearing on it. The reactions may occur from the smallest amount possible after one dose and the reactions may occur right away or after a little passage of time, even after a few weeks or chronically after a period of time.

It is believed that the type B reaction is an immune-mediated toxicity. This means an idiosyncratic reaction is an immune system response, which causes the drug to be toxic or poisonous to the individual who ingested it, inhaled it or absorbed it through the skin and causes cellular damage. Experience and research indicate that very few treatments exist. One must stop taking the drug, repair the damage if possible and provide life support if needed.

It should be noted that there may be no reaction the first time, but may happen after the second time it is prescribed or at any time, even if taken for many years with no problems. The unexpected reaction may also occur after discontinuing the drug many weeks previously. The reaction or side effect may not be the same each time the drug is introduced.

Research indicates idiosyncratic effects are related to metabolic, mitochondrial and inflammatory dysfunction rather than the immune system and that there might be a genetic link in many cases.

Why is this an issue for individuals with Periodic Paralysis? Periodic Paralysis is a mineral metabolic disorder. Paradoxical reactions and idiosyncratic reactions are related to metabolic dysfunction. Strange, odd and out of the ordinary side effects and drugs creating the opposite effects are common characteristics of individuals with all forms of Periodic Paralysis, especially the form known as Andersen-Tawil Syndrome.

Many individuals with Periodic Paralysis have serious side effects from the drugs they are prescribed. Without knowing this and without a diagnosis, doctors will prescribe drugs to treat symptoms that appear to be neurological or for other issues. The patient will use the pharmaceuticals and develop new symptoms, over time. These symptoms begin to look like something else for which new medications are prescribed, and the cycle continues. Or if there is no diagnosis and a person is suspected of having a conversion disorder, once everything else is ruled out, psychotropic medications may be prescribed. These medications can become out of control and it is not uncommon to be on 5 or 10 or more drugs at one time. They are toxic to the body and are causing damage. Most of them are also triggers for the periods of paralysis, and each paralytic episode causes more damage to the body.
I am a victim of this cycle. I was misdiagnosed several times, given medications for which created new symptoms for which more drugs were prescribed. I was experiencing ataxia, dyskenesia, tremors, heart issues, blood pressure issues, anxiety, pain, passing out, muscle weakness and more and of course episodes of partial and full body paralysis. At one point I was on 15 different drugs, of which I actually needed not one of them.

I finally had a huge seizure or stroke-like episode. I ended up in the hospital. I was given more medications causing hallucinations, among other things, and which left me in and out of consciousness. I was permanently left with muscle weakness, breathing issues and exercise intolerance. I could not take care of my own personal needs like toileting, bathing, dressing or eating. It took many months to be able to have strength enough to stand by myself and I had to learn to walk again with the aid of a walker and physical therapy. I have never recovered to the point I was before that episode. I now use a power wheelchair for anymore that a few steps, am on oxygen therapy 24 hours a day, must refrain from any exercise or exertion, am stuck in a recliner all day and much more.

With a proper diagnosis and without all of the unnecessary drugs, which caused paradoxical and idiosyncratic reactions, I would be much better in all ways. The following is a partial list of some of the drugs I took and some of the obvious effects of each.

Acetazolamide/Diamox/Keveyis: Metabolic acidosis, unconsciousness, paralysis, and more
Metformin: Tremors and ataxia
Albuterol: Tremor, ataxia and paralysis episode
Diltiazem: Ataxia
Seroquel: Seizures, paralysis episodes
Flouxitine: Seizures, paralysis episodes
Cipro: Partial paralysis of legs and painful tight calves
Macrodantin: Partial paralysis of legs and painful tight calves
Septra: Ataxia, paralysis, metabolic acidosis
Ranitidine: Ataxia
Detrol LA: Ataxia
Reglan: Dyskenesia
Forteo: Ataxia
Atenolol: Low blood pressure, passing out
Psychotropic medications: Seizures
Narcotics: Unconsciousness, nausea due to
Pain Killers: Low blood pressure, passing out

(This does not include all of the drugs that cause long QT heartbeat
and any or all of them trigger episodes of full-body paralysis.)
 In conclusion, a paradoxical or idiosyncratic reaction is an immune system response to drugs due to genetic predisposition and metabolic dysfunction in individuals with Periodic Paralysis, a mineral metabolic disorder. This includes the medications specifically prescribed to treat Periodic Paralysis ( Acetazolamide/Diamox/Keveyis).
Precautions must be taken to avoid these effects. Stop the drugs (with the help of a doctor, very carefully) or do not start them at all. There are natural ways to control many of the symptoms of Periodic Paralysis, namely avoiding triggers and other common sense and natural methods.

Added 9-24-2020:
What are the Periodic Paralysis Triggers? AVOID AT ALL COST

Thursday, December 19, 2013

Finding a Doctor Who Cares

Hello All,

I had a great day yesterday. I was recovered enough to run errands and grocery shop with Calvin. We had a great time and when we got home and I did well except for some weakness and dizziness in the evening. I was very excited when a package was delivered in the afternoon. It was my first copy of my second book, which I actually wrote many years ago, but finally was able to publish it in paperback. It is about my daughter Sandy, who was born with Sotos Syndrome. She passed away at the age of 5. Her life and death touched me in many ways and prepared me for living with my own disabilities. It was a wonderful early Christmas gift.

Finding a Doctor Who Cares
So many people with all forms of Periodic Paralysis struggle with locating doctors who can and will help them with both a diagnosis and proper treatment. They go from doctor to doctor and disappointment after disappointment, misdiagnosis after misdiagnosis and mistreatment after mistreatment. This can go on for years with the misinformation following them from physician to specialist. Often, this will lead to a diagnosis of hypochondria, malingering or the archaic “conversion disorder” and a referral to a psychiatrist. Many of the patients become depressed and begin to doubt themselves after being prescribed medications for mental disorders that invariably make the symptoms worse or different, thus creating the need for yet another referral to yet another specialist.

This vicious cycle can continue for years as the symptoms worsen and the patient becomes more disabled and debilitated. Family and friends tire of dealing with the situation and many friends are lost, marriages end in divorce and family members withdraw their support. The patient is left in more pain and despair and the humiliation can be unbearable. Many are never diagnosed and never receive the treatment they need and deserve.

I myself saw 30 different physicians in 6 years before I was diagnosed at the age of 62 after a lifetime of illness, disability and loss of friends, family and a marriage. For the most part they were rude and did not understand what was happening to me. Most of them were frustrated and believed it to be all in my head.
At one time,
I was trying to find a new doctor because my previous doctor moved out of town suddenly. The new doctor I chose told me on my first and only visit, "You are too sick, I will not take you as a new patient". I started crying and cried all the way to the insurance office. I reported him and was told that he did not have the right to do that. They called it "cherry picking",  but they did refer me to another doctor.

After my diagnosis I have seen twelve more doctors, all of who do not know how to help me, including one who is a specialist in Andersen-Tawil Syndrome. I have been in contact with a physiologist who studies ion channelopathies who would like to help me and my family but is not sure how. I have spoken with one of the neurologists who misdiagnosed me, who has now apologizes for missing some important findings in my labs and the opportunity to diagnose me two years earlier.
I also was able to finally locate a few doctors who have been willing to work with me (two more left town after seeing them for a short while) and have read the information I provided for them about Periodic Paralysis and done some research on their own. They do not deal directly with my PP symptoms, however, but with the things they know about, such as, diabetes, oxygen therapy and referrals to specialists as I need them.

After all of my experiences with finding doctors who will work with me, I have devised a common sense plan that can assist anyone to locate a doctor (Primary Care Physician: PCP) who will be willing to work with them before they ever step into the physician’s office. There will be no more insults from a person who should be showing compassion and no more leaving the office in tears and despair.

1. The most obvious place to begin your search, if you have a good doctor who has decided to move on in his or her career, is to ask your present doctor for the name of a physician who knows about periodic paralysis or who would be willing to work with you. If he or she gives you a referral, be sure to have them confer with the new doctor about your disease and provide him with as much information as possible before your first visit. You may also want to provide information of your own ahead of time.

2. If you are not that lucky, the next thing you can do if you have insurance, is to call your insurance company and request a “patient advocate” or “case manager”.  Most insurance companies have employees whose job is to help their clients who have “more than the average” or “out of the ordinary” medical needs.

A patient advocate is someone who works on behalf of patients and their families during stays in the hospital or other medical situations. Many different organizations employ on-site advocates to deal with the daily needs of patients… The patient advocate's primary function is to serve the patient's needs, along with the needs of their family.”

Once an advocate is assigned to you, you will need to explain your situation and Periodic Paralysis and explain your need to find a doctor who knows about the disease or who will be willing to work with you. It would be wise to seek out neurologists, internal medicine doctors and endocrinologists. You may need to see more than one doctor before you find the “right” one for you.

3. If your insurance company does not have patient advocates and has a restrictive list of particular doctors and specialists covered in their program, again, you will need to explain your situation and Periodic Paralysis and explain your need to find a doctor who knows about the disease or who will be willing to work with you. They will sometimes do the work for you.

If not, you can go through the lists of neurologists, internal medicine doctors and
endocrinologists and call each office and ask for the office manager. You will need to explain your situation and Periodic Paralysis and explain your need to find a doctor who knows about the disease or who will be willing to work with you. In most cases, the office managers will speak to the doctor or doctors about your case and get back with you if the doctor is willing to see you.

4. If your insurance is not restrictive, you will have to check your local phone book or the web for neurologists, internal medicine doctors and endocrinologists in your area and proceed with the phone calling until you find one who will work with you.

Another good option, if your insurance is not restrictive and requires no referrals, is to check out the clinics in your area. The one I attend has 85 doctors and are connected to a local hospital. There should be at least one doctor willing to work with you.

You can proceed as explained previously; call and speak with one of their representatives. Explain your situation. The representative will go through the list of their physicians and chose a few that may work for you. The doctors will be consulted and one or two may agree to see you. It may be wise to spend time with each to decide the “best fit” for you.

5. Without insurance, seeking out help from your local health department can be productive. Also your local services for disabled will have some possible options for finding a local doctor. You may be able to secure a social worker. He or she may do the work for or with you.

6. Thinking “outside of the box” can bring some surprises. I was so frustrated and about to give up on ever finding a local doctor who could diagnose and treat me, when I had a wild idea.

One of our local television stations offers a wonderful service every Tuesday evening during their two-hour news coverage. A local physician, and a guest specialist of her choosing, take calls from viewers and answer medical questions.

I called and asked if she knew about Periodic Paralysis. I was shocked when she told me she had a patient who had it and that the patient saw a local neurologist who treated her. She gave me the name of the neurologist. I made an appointment and after two visits was diagnosed! (I must explain that I had all of my medical records in hand with years of medical testing ruling everything else out and a referral from my nurse practitioner.)

7. The next option I offer must be used with caution. You may search the web for specialists. Seeking out these specialists in the field of Periodic Paralysis or Andersen-Tawil Syndrome, may lead you to some severe disappointment. There are several across the United States and a few around the world. Many do not see patients and are involved in research only.

The specialists will only diagnose based on genetics or a very “pure” form of the disease. (This may be based on the fact that most of them are researchers and their funding is based on working with only those who are genetically diagnosed. This leaves out a high percentage of us.) Their view can be extremely narrow and I have been surprised that their knowledge of the disease can be severely lacking in some areas. Their only option for treatment is limited to medications that do not work for many of us. If you have other conditions co-existing with your Periodic Paralysis or do not have a known genetic code, you will be sent packing in tears and humiliation. It is not worth the time or money you may spend to travel to another state or country.

Recently, I know of several individuals who had symptoms of Periodic Paralysis. They went to great expense to travel to the “specialists” only to be told that they absolutely did not have Periodic Paralysis. Within a few months, genetic testing proved that they did indeed have variants of Periodic Paralysis.
8. The Muscular Dystrophy Association (MDA) is an organization that treats patients with muscle diseases, and lists all the forms of periodic paralysis under that umbrella. In order to see their doctors you must already have a diagnosis or be referred for a diagnosis by a doctor. However, most of the doctors we have information about at the MDA Clinics, do not know about Periodic Paralysis or Andersen-Tawil Syndrome. Most offices around the country do not know about Periodic Paralysis. If you call for a referral or information, you will probably be told that they do not know what you are talking about. I have had to call many MDA offices around the country for patients to tell them that they do indeed treat Periodic Paralysis and Andersen-Tawil Syndrome patients. I refer them to this information at their own website:

Also, although you may already have a diagnosis, you must see their doctors and be re-diagnosed before you will receive any treatment or benefits offered. If the MDA doctor does not agree with your previous doctors due to their lack of knowledge of the disease or their narrow view based on old facts and research, you may lose your diagnosis. It is not worth the chance. That being said, there are some very good MDA doctors and some of our friends with Periodic Paralysis are having some success with the ones they are seeing.


Many of the people with genetic codes that have been located do have good doctors and receive good treatment and proper medication for their particular forms of Periodic Paralysis. They are very lucky. The medications help them and they can lead nearly normal lives as well.

I understand, however, it is difficult to find a doctor who will work with those of us who suffer from the effects of Periodic Paralysis, if we have not yet been diagnosed or those of us with variants for which no genetic code has been discovered yet, even if we have been diagnosed clinically (based on symptoms) or for those of us who have other diseases which co-exist with our form of PP. The truth is, very few of us will get any real help from a doctor even if we find one who knows about the disease and is kind, sympathetic and empathetic. This is due to the fact that most of us are unable to tolerate the known medications and the doctors do not know how to help us.

 So, although I have a Primary Care Physician and several good specialists, Calvin and I are still left to deal with my episodes of paralysis and my other symptoms with no real help from the medical field. They do not know how to help me, but treat me well and look after the things they can; like my heart problems, power wheelchair, oxygen, diabetes strips, labs, etc. I appreciate and understand their lack of knowledge of such a rare and baffling disease. They trust us with the plan we have created after much research and trial and error.
We have created a website and a forum with several support and discussion groups and this blog and we have written a book “Living With Periodic Paralysis: The Mystery Unraveled” (11/28/2017...and now three more books) to pass along this information and hope to help others in a way the doctors are unable to at this time.

I “walk the tightrope” daily to avoid episodes and the serious symptoms they create.  This plan is outlined on our website and in our book and is discussed on our support and education group.

Until later...

Wednesday, December 18, 2013

Periodic Paralysis and Metabolic Acidosis

Hello All,
I had a fairly good day yesterday as long as I did not get up. Once up on my feet, I got dizzy and weak. Otherwise, I stayed busy with writing, editing, analysis of survey data and research. I also took some time to make a grocery list in case I was well enough today to go shopping with Calvin.
Since I am feeling fairly well this morning, I think I will try to venture out with Calvin. We will go to our organic market to purchase our vegetables and other unprocessed foods for our pH balanced diet.

I have chosen, today, to write about the reason I follow a pH balanced diet; the issue with metabolic acidosis.
Periodic Paralysis and Metabolic Acidosis 

Periodic Paralysis is a 4th class mineral metabolic disorder. People with mineral metabolic disorders tend to have chronic metabolic acidosis. Metabolic acidosis is an excess of acidity in the fluids of the body. In chronic metabolic acidosis, osteoporosis and kidney stones may develop.
Metabolic acidosis is a pH imbalance (the balance between the acid and alkaline), in which the body accumulates an excess of acid in the body fluids and does not have enough bicarbonate to neutralize the effects of the acid effectively. An individual can develop metabolic acidosis, if the carbon dioxide levels are allowed to rise and remain in the body.
We know that metabolic acidosis affects the heart and breathing. It results in potassium shifting out of the cells and into the bloodstream creating hyperkalemia, too much potassium. The combination of metabolic acidosis and hyperkalemia is a serious condition and can be life threatening leading to shock and death. Metabolic acidosis may also occur in low potassium levels.
Some of the more common symptoms of metabolic acidosis are muscle weakness, bone and muscle pain, headache, chest pain, tachycardia, heart palpitations, abdominal pain, rapid breathing, shortness of breath, confusion, drowsiness, a lack of energy and paralysis for persons with Periodic Paralysis. If metabolic acidosis becomes severe it can lead to shock (a lack of an appropriate flow of blood in the body) or death. However, the symptoms of metabolic acidosis are sometimes not very obvious or specific, depending on the cause. It should be noted that in some individual’s metabolic acidosis could be mild and ongoing (chronic).

In chronic metabolic acidosis an individual’s bones and kidneys are affected. When potassium shifts in the body, calcium carbonate from the bone is released. This causes a loss of the bone crystals leading to osteoporosis. When the kidneys are affected, this can be seen by the formation of kidney stones.  

Normally our pH level should be 70% alkaline and 30% acidic. If we do not eat a balanced diet and eat more acidic foods, we are too acidic and we can develop metabolic acidosis a serious condition. Through research we found that those of us with PP may have chronic levels of metabolic acidosis. So a balanced pH diet is a very good plan for some of us.

The normal diet in the U.S. is very acidic with meat, fats, dairy, sugar, white flour, and with all the processed foods we eat. This makes many normal people acidic and they become ill with any number of symptoms and illnesses. So imagine what it does to us with Periodic Paralysis?  We develop, metabolic acidosis, which we are already prone to developing.

 One of the major drugs used for treating Periodic Paralysis is acetazolamide also sold under the name of diamox.  It is a carbonic anhydrase inhibitor, which is a diuretic. It removes water through the kidneys. Interestingly, it is used to treat mild metabolic acidosis, however, it actually leads to more metabolic acidosis by speeding up the process. Many individuals taking this drug to treat their symptoms of Periodic Paralysis are unknowingly making themselves worse and causing more damage to their bodies. It also lowers potassium. Many people are also unaware that it is a sulpha-based drug and should not be taken if an allergy exists to sulfa drugs.
If one already has Periodic Paralysis and has chronic metabolic acidosis he or she can develop kidney stones and osteoporosis over time. If one already has Periodic Paralysis and has chronic metabolic acidosis and takes diamox, he or she can become more acidic and can acquire full blown metabolic acidosis which causes more damage and kidney stones and accelerates osteoporosis, more illness, more paralysis from the stress on the body and lowering of potassium and may even cause death. (Please research this well as you make your choices about the drugs you are using.)

So it is especially important for individuals with Periodic Paralysis to maintain that 70/30 balance and it can be done with a pH diet. We may eat some of the foods, which are more acidic, just remember to keep the 70/30 balance to avoid or lower the metabolic acidosis.

Until later…