Demyelinated not Destroyed

One of the things a person with a demyelinating disease can do to help themselves and their condition is to exercise.  It seems like such a simple thing but it can have a huge impact.

What does it do?

Exercise is extremely beneficial for those who are in good health and those that are not.  Exercise keeps your body and cardiovascular system strong and in good shape.  It can also strengthen your immune system, making you less inclined to get sick.  Regular exercise can make you stronger and more agile, also.

Why is it important?

For people with demyelinating diseases, exercise is crucial.  When in the middle of a relapse or other worsening of symptoms, it can be easy to get in a habit of laying around.  Unfortunately, muscles begin to atrophy if they aren’t used enough.  This leads to even more weakness and loss of balance.  It can become a vicious circle of further weakness and other problems if left unchecked.

Exercise provides many other benefits, as well.  Many studies have proven that people with Multiple Sclerosis experience shorter relapses and less flare ups if they follow a steady exercise regime.  No or low impact exercises are perfect for a wide variety of individuals and are less likely to cause strained on already overtaxed muscles than higher impact exercises.  Since exercise can also strengthen a person’s immune system, it stands to reason that exercise can help in the fight against autoimmune diseases.

Things to keep in mind

Before starting any exercise regime, it’s important to contact your doctor ahead of time.  Discuss what kinds of exercises are right for you and your individual circumstances.

Many insurance companies are now starting to cover the cost of gym memberships.  Talk with your doctor or one of the customer service representatives to find out whether or not your insurance will cover the cost.  If they do, ask if there are any special forms you need to fill out to get your gym membership covered.

It is especially important to not overdo any sort of exercise.  Any muscle injuries can be complicated by a demyelinating disease.  Overdoing it can also lead to severe fatigue as your body tries to rest.  Severe fatigue can also lead to increased muscle spasms and muscle cramps.

My experience

Admittedly, I haven’t been very good getting the exercise I need.  I know I would probably have more energy and more endurance if I exercised regularly.  I did notice that the times I followed a steady exercise regime, I felt better.  My symptoms were less and I had more energy.  I also noticed that my overall attitude was better.  I was less stressed and happier.  Just an improvement in my mental state makes daily exercise worthwhile, in my book.

Have you ever had one of those days where you just feel off?  Not terribly bad but not terribly good, either.  Yup, I’m having one of those days.

For the most part, I will either have a good day or a bad day CIDP symptom wise.  Some days, my CIDP makes it hard for me to function well.  Others, I have the energy and coordination I need to do the things I not only need to do but enjoy doing.  Today was neither.

The tingling in my hands, arms, legs, and feet is at one of my all-time lows today.  I can’t even really feel tingling in my right hand.  The tingling in my legs is fairly faint, as is the tingling in my left hand.  I’ve got so used to having to deal with it that it feels a bit odd right now.  I haven’t tested whether or not I’ve gotten much in the way of feeling back yet.  I’ll have to do that soon.

While my tingling has decreased significantly today, so has my strength.  I’ve been feeling weak almost all day long.  Earlier, I had a fairly bad intention tremor in my right hand, something that isn’t normal at all.  Usually the only tremor I have is in my left hand.

I’m not really sure what to make of my symptoms today.  On the one hand, having less tingling is definitely a good thing.  On the other hand, getting weaker is bad.  To be honest, I’d rather keep the tingling but be stronger.  I can function with the tingling.  I can’t function when I feel like I’m going to collapse at any moment.

When living with a demyelinating disease such as Chronic Inflammatory Demyelinating Polyneuropathy or Multiple Sclerosis, chronic fatigue can become a part of life. Fatigue can be made worse in those living with diseases that cause demyelination by any number of factors. There are also many different ways to combat fatigue.

What is it?

Fatigue is an overwhelmingly tired feeling. It’s your body’s way of saying that you need to rest. In our constantly on the go society, I expect most everyone has experienced fatigue at some point in their lives. It’s particularly easy for people living with demyelinating diseases to get fatigued.

What causes it?

There are many things that can cause fatigue in both healthy individuals and those living with demyelinating diseases.

• Poor lifestyle habits – Improper rest, poor nutrition, lack of exercise, work, and stress can all cause fatigue. Too much exercise can also cause fatigue, so pay attention to your body and don’t push it too far.
• Diseases – There are many diseases that wear down the body and can cause fatigue. Autoimmune disorders and diseases that cause demyeliantion are a given. Heart disease, cancer, low blood pressure, diabetes, narcolepsy, renal disease, and anemia along with acute illness such as the flu can also cause fatigue.
• Mental disorders – Mental disorders such as depression have been known to cause fatigue.
• Medication – There are numerous medications that can cause fatigue. Antihistamines, antibiotics, blood pressure medications, pain killers… you name it, every type of medication probably has at least one medicine that causes fatigue.
• Chronic Fatigue Syndrome – It goes without saying that Chronic Fatigue Syndrome causes fatigue. If your fatigue symptoms last longer than six months and are accompanied by swollen lymph nodes, sore throat, and muscle weakness with no other explanation for the fatigue, it’s possible you have Chronic Fatigue Syndrome.

How is it diagnosed?

As with pretty much everything requiring a diagnosis, your doctor will take an extensive medical history to help determine the cause of your fatigue. Since there are so many things that can cause fatigue, a detailed medical history is a must in getting an accurate diagnosis. Keeping a journal of your symptoms, daily activities, diet, exercise, and a list of medications you take along with how often you take them will go a long way towards getting a solid diagnosis of what’s causing your fatigue. To help rule out whether or not stress is a factor in your fatigue, be prepared to talk about your work and home environment. Routine tests such as blood tests might be ordered to rule out any metabolic causes.

How is it treated?

How your fatigue is treated is dependent upon what is causing your fatigue. For those living with chronic fatigue because of a disease, there are several things that might be done to treat it. Medication might be prescribed as well as dietary and lifestyle changes. Daily activities might have to be adjusted in order to more effectively deal with any chronic fatigue experienced.

• Caffeine – In normal individuals who deal with fatigue occasionally, a stimulant such as caffeine can be used to give a burst of energy. Caffeine is addictive so it must be used with caution. It can also cause insomnia if used too often. Insomnia will only make your fatigue worse.
• Lifestyle changes – Getting proper rest, nutrition, and exercise is the best way of dealing with fatigue. Make sure you drink enough water and eat a balanced diet every day. Cutting back on the amount of stress or finding alternative ways to deal with stress such as meditation or engaging in activities you enjoy can lower stress levels and decrease fatigue.

Alternative treatments for fatigue – Some alternative treatments for fatigue include:

• Essential oils – Rosemary, eucalyptus blue gum, peppermint, and citrus essential oils put in a bath or inhaled through a vaporizer can stimulate the senses and give a burst of energy.
• Acupuncture
• Herbal therapy – In traditional Chinese medicine, it’s believed that fatigue is caused by a blockage of the energy flow inside the body. Herbal therapies are used to rebalance the system.
• Deep breathing exercises – Most people under stress breathe with their chest instead of their diaphragm. Chest breathing is shallow. Shallow breathing for extended periods of time can result in fatigue. Breathing through the diaphragm gives deeper breathes which results in more oxygen being circulated through the blood. More oxygen in the blood means less fatigue.
• Color therapy – It is believed that certain colors illicit different responses in the body. Being wrapped in red or orange cloth or being bathed in red or orange colored light is believed to help relieve fatigue by energizing the body.

My experience

I didn’t really have many problems with fatigue until a couple of years ago. As my CIDP progresses and I have more symptoms cropping up for longer periods of time, I find I’m getting fatigued more and more easily. I know part of the reason is my body has to work so much harder now due to the demyelination and weakness I’m experiencing. I often explain my fatigue to my friends by saying that if they walked a mile, it would be like me running a marathon. I

I was prescribed Provigil to help with the fatigue. I’ve taken it with mixed success. My body tends to overreact to medications. Because of that, for the first few days, it left me jittery and nervous feeling. The problem I encountered was the worst of my fatigue happens just before noon. Provigil is designed to help more with early/late afternoon fatigue. I would have to wake up in the wee hours of the morning for it to have any positive effect for me. Provigil is also extremely expensive and not covered by most insurance prescription plans.

More information on fatigue can be found here.

One of the biggest problems of living with Chronic Inflammatory Demyelinating Polyneuropathy is having to deal with the uncertainty that it brings.  It’s hard to want to dream of the future or make plans when you don’t know how you’ll be doing from day to day.  I really believe that the uncertainty that surrounds CIDP is almost as crippling as the demyelination it causes.

While the neuropathy and demyelination affect you on a physical level, uncertainty hits you on an emotional one.  Emotional issues can be much more difficult to deal with than physical ones sometimes.  You can be having a bad day physically but if you’re in a good mood, it makes everything you’re dealing with seem okay somehow.  If you’re depressed or upset, it really doesn’t matter how good of a day you’re having neuropathy wise.  The day will seem bleak because you’re just not in a good enough frame of mine to appreciate it.

Right before I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy, I was making plans to finally go back to college.  It had taken me years to decide what I wanted to get a degree in but I had finally settled on something.  I wanted to be a nurse practitioner or a midwife.  I was taking an online doula and childbirth educator course in an effort to eliminate whether or not I wanted to pursue being a midwife.  The online courses were fairly quick and cheap.  I didn’t want to pay all the money to enroll in a midwife course only to later find out it wasn’t the path I wanted to take.  I had found a local midwife that I could intern with as a doula and childbirth educator while watching how a midwife works.  I had just started my internship with her and was excited about the future.

For the first time in a long time, I had everything in my life in about as much order as I could get it.  I was still dealing with my various neuropathy symptoms on a daily basis but I had a good neurologist.  Every time I left an appointment with him, I felt like I had made great strides towards getting a diagnosis and treatment.  I had hope.  In spite of the demyelination I knew was occuring, the future looked bright.

Then I received a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy and all that changed.  Suddenly, my life was filled with turbulence again.  Everything had gotten thrown up in the air.  I’ve never been a talented juggler.  Instead of finding a way to juggle my hopes and dreams with the realities of a CIDP diagnosis and treatment, everything just hit the floor and scattered.  You would think I should be happy that I finally received a diagnosis after five years of searching, and I was… to an extent.  But sometimes the answers we receive aren’t always the ones we’re prepared or even willing to hear.

Looking back, I don’t think it was any one thing that sent me into a tailspin when I received my diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy.  I wasn’t expecting to receive a diagnosis of CIDP the day I did.  I was scheduled for my regular six week check up with my neurologist.  He was monitoring me closely because of how much demyelination had to be occuring in me on a steady basis.  I was losing feeling, balance, strength and reflexes pretty steadily while having an increase in fatigue, tingling, muscle spasms, and muscle cramps.  Still, I was functioning fairly well and was able to do a lot.  I had no reason to believe my appointment would be any different than the numerous ones before it.

In my desperation to receive some relief between appointments, I had taken the steroid pack I was prescribed just in case I needed it.  The relief I received from that steroid pack is what clinched the diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy in my neurologist’s mind.  Suddenly, I had a diagnosis and was being scheduled for a couple of tests to confirm it and IVIg treatment.

I was dazed as I left my neurologist’s office.  The day I had wanted for so long had finally come and now everything was moving so fast.  Any control I felt I had up until that point was taken from me.  My plans for the future had to be pushed aside as I suddenly had to make room in my life for treatment, more tests, and more appointments.

Around that same time, my Chronic Inflammatory Demyelinating Polyneuropathy began to cause problems in my legs.  Up until then, the majority of my problems revolved around my hands and arms.  Now I was dealing with numbness, tingling, and weakness in my legs.  This resulted in increased tripping and fatigue as I was having to work so much harder to be active.  I was losing my endurance, too.  I knew I was getting worse but there wasn’t anything I could do about it while I waited for treatment to begin.

Knowing my CIDP was getting worse led to depression.  It’s hard to be a 30 year old wife and mother who wants to be active in the lives of your husband and children but know you can’t because your body has decided to be its own worst enemy.  Due to my heat sensitivity, my symptoms would vary in severity almost daily.  Not knowing how well I was going to feel from day to day only made my Chronic Inflammatory Demyelination Polyneuropathy induced depression worse.

Thankfully, I managed to get my head on straight again, as it were.  Instead of focusing on all the things I couldn’t do, I focused on all the things I could do.  My plans to go back to college are on hold until I know how often I’ll be receiving IVIg treatment.  Becoming a doula also has to wait until then.  Doulas are on call 24/7 when their client’s due date nears.  Obviously, it would be awful if one of my clients went into labor while I was in the middle of receiving IVIg.  The five days of having an IV in my arm would prevent me from being able to help her during labor like I was contracted to do.

For now, I’m focusing on my writing.  Writing is something I have always enjoyed.  I like expressing my thoughts on paper and getting lost in my familiar land of daydreams as I create stories.  Since I’ve started writing in earnest again, I’ve discovered there are quite a few people that like to read my stories.  It makes me happy to know that others enjoy what I’ve written.  I’m also starting to get paid for my work, something before now I thought would only happen in my wildest dreams.

It took getting a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy for me to get back into a hobby I love and ultimately realize a childhood dream of mine.  The uncertainty of living with CIDP is still there.  It always will be.  I’ve just learned how to bend as my symptoms change instead of breaking.

Muscle spasms and muscle cramps are something most everyone will experience in their life at one time or another. Most muscle spasms and muscle cramps are fairly innocent and easy to avoid. People with neuropathy and demyelination from autoimmune disorders can experience them quite often, however.

What is it?

Muscle spasms and muscle cramps are caused by an involuntary muscle contraction. They can happen in any muscle. Most people living with demyelinating diseases experience them in their arms, hands, feet, and legs. Muscle spasms tend to come in groups, each contraction lasting for a second or so before releasing and then contracting again. Muscle cramps are a constant contraction of the muscle. Unless a muscle spasm is particularly strong, they tend to be more annoying than anything. Muscle cramps can vary in intensity from mild to strong. The stronger the muscle cramp, the more pain it causes.

What causes it?

Under normal circumstances, muscle movement is caused by the brain. The brain will send a message that a muscle needs to move. The message is sent along nerves from the brain, to the spinal column, and then finally to the muscle where it either expands or contracts based upon the message received. When a nerve is damaged through demyelination, messages are misinterpreted if they are received at all. The damage to the nerves can cause muscles to fire on their own, without any message from the brain, as well. Damaged muscles can also cause a muscle to spasm or cramp on its own. Other causes of muscle spasms and muscle cramps are:

• Exercise - Muscles need energy in order to relax. If you exercise for too long and ignore your body’s messages that it’s time to stop (fatigue, pain, etc…) you will become overly tired. When you become overly tired, you don’t have any energy for your body to devote to relaxing the muscles you were just using. That lack of energy can cause muscle spasms and muscle cramps.
• Dehydration and salt depletion - Not drinking enough water, particularly on hot days or when exercising, or being ill with vomiting and diarrhea can cause you to become dehydrated. When you don’t have enough water or salt in your system, it can disrupt how your muscles function, resulting in muscle spasms and muscle cramps. It is important to make sure you get the proper amounts of water, salt, potassium, magnesium, and calcium in your diet to prevent this from happening.
• Stress - Being under large amounts of stress can cause muscle spasms, in particular.
• Metabolic disorders - Inherited diseases that affect how much energy is in the muscle can cause muscle spasms and muscle cramps. These metabolic disorders cause particular muscle enzymes to be deficient, resulting in the last of energy available to the muscle. One of these metabolic disorders are McArdle’s disease. Some of the muscle enzymes that can cause muscle spasms and muscle cramps if they are deficient are myophosphorylase, phosphorylase b kinase, phosphofructokinase, phosphoglycerate kinase, and lactate dehydrogenase.
• Myotonia - While myotonia typically only causes stiffness due to a delayed relaxation of the muscles, many people with myotonia do experience muscle spasms and muscle cramps from exercising too much.
• Fatigue - Being overly tired can cause muscle spasms and muscle cramps
• Medication - Certain medications can interfere with the body’s ability to send and receive message along the nerves, causing muscle spasms and muscle cramps as messages are misinterpreted or not received.

How is it diagnosed?

The first step in diagnosing muscle spasms and muscle cramps is to clarify what both terms mean to the doctor and the patient. It can be easy to confuse the two terms for some people. Muscle spasms are quick muscle contractions that tend to happen in rapid succession. Muscle cramps are prolonged muscle contractions that can last for anywhere from a minute to days. It is also possible for a muscle cramp to become permanent in people with demyelinating diseases.

Once a consensus is reached on what both terms mean, the doctor will take a complete medical history of the patient. Questions asked will usually include how often the patient has muscle spasms and muscle cramps, how long they last, where they typically have them, if there is any correlation to activity the patient was doing when the muscle spasms or muscle cramps came on, and if any relatives have metabolic disorders.

After the medical history is taken, the doctor will perform a variety of tests. A complete neurological exam to test reflexes and the like can be done. Blood work can be done to rule out metabolic and dietary causes. An EMG or electromyography can be done to test muscle function at rest and when contracted. An EMG can determine whether or not a muscle is functioning properly and if there is damage to any of the muscles.

How is it treated?

Careful stretching before and after working out can help relieve muscle spasms and muscle cramps brought about my exercise. Drinking plenty of water will keep muscle spasms and muscle cramps brought about by dehydration at bay. If the muscle spasms and muscle cramps are being caused by metabolic disorders, neuropathy, or demyelination, medication can be prescribed to prevent them.

Alternative treatments for muscle spasms involves taking herbs and vitamins. Ginko, Japanese quince, magnesium, vitamin E, niacin, and calcium have all been shown to help ease muscle spasms and muscle cramps. Eating a banana has also proved beneficial for some due to the large amount of potassium bananas contain. Whenever undergoing herb and vitamin therapy, it’s important to discuss all supplements taken with your doctor and to be aware of what the dosing limits are. Overdosing on vitamins, particularly potassium, can be fatal. Massage can be used to help particularly stubborn muscle cramps.

My experience

Muscle spasms was the second symptom I developed. Much like my experience with tingling, for the first few years, the muscle spasms would come and go. For the past year or so, I have been experiencing muscle spasms on a daily basis. I get them pretty much everywhere I have a muscle. Let me tell you, muscle spasms on your tongue can be an interesting experience! The muscle spasms will typically last for a minute or so in one location the stop. I have had occasions where they have lasted for several hours in one spot, though. The next group will hit at random, often in a different location.

With the increase in muscle spasms, I’ve started to have muscle cramps. The areas most often affected by muscle cramps are my biceps, hands, and bottom of my feet. When I get a bothersome muscle cramp, my husband can usually be coaxed into massaging it for me. Most of the time it works, although just recently I had a muscle cramp in my hand that simply refused to go away in spite of the massage.

For the most part, I find muscle spasms and muscle cramps to simply be annoying. The muscle spasms and muscle cramps I experience don’t tend to be overly strong, however. The times they have been strong, it can be difficult to not reach for a muscle relaxer for relief.

For more detailed information, please visit here. As a warning, the site is a bit heavy with medical terminology.

For those who stop by to read this blog, if you find the format and information of this post helpful, could you please leave a comment to let me know? If there’s anything I should change, please let me know that, too. I’d appreciate it. Thank you!

My journey with CIDP began five years ago when I went to see my family doctor about tingling in the palm of my left hand. The tingling encompassed the entire underside of my palm. At the time, it was suspected I had carpal tunnel syndrome in spite of the fact that carpal tunnel syndrome is typically isolated to the index, middle, and ring fingers, in addition to the palm of the hand.

Ever since middle school, I have spent a lot of time on the computer, writing. It made perfect sense to my doctor and I that I could have carpal tunnel syndrome. Just to be certain, my family doctor referred me to a neurologist to get a nerve conduction study done. Nerve conduction studies are routinely done in order to diagnose carpal tunnel syndrome.

I went to the appointment, expecting to be poked and prodded a bit. I thought I would be told I had carpal tunnel syndrome and that I needed to cut back on the amount of time spent on my computer. The being poked and prodded definitely happened but no diagnosis came that day.

When I arrived, the neurologist took my complete medical history, which included a reflex and balance test. Then, the nerve conduction study began. He made lots of measurements and drew lots of marks on my left hand and arm. He would take a few measurements, then place the leads on my arm that were needed to give me the little, electrical shocks that comprised the nerve conduction study. After one series of measurements was completed, he’d move on to the next and the process would start all over again.

The tiny electrical shocks of the nerve conduction study in no way prepared me for the one I was to receive after the test was over.  As I sat on the exam table, admiring the black Sharpie Xs on my left hand and arm, the neurologist told me that I definitely didn’t have carpal tunnel syndrome.  He looked at me and said, “I think you might have Multiple Sclerosis.”

I was floored.  I remember my neurologist going over my medical history and the results of the various tests he had performed on me that day.  I had a history of migraines, was 24 years old, had recently had a child, and had hyper-reflexes.  That combined with the tingling in my left hand that clearly wasn’t being caused by carpal tunnel syndrome made my neurologist suspect I was in the very beginning stages of Multiple Sclerosis.

Unfortunately, due to the accepted protocols for diagnosing Multiple Sclerosis, there was little that could be done for me at that moment in time.  An MRI and lumbar puncture would have been useless.  If it was a first relapse, as was suspected, the lesions wouldn’t show.  My neurologist advised a “wait and see” approach.  When I left his office that day, he told me to call him if I had any further problems or if the tingling got worse.

I called my husband as I drove home from my neurology appointment to give him the news.  I was still very much in a state of shock.  Once I got home and reality started to set in, I did the only thing I could do; I got online and began to research as much as I could about Multiple Sclerosis.  It wasn’t much but it empowered me.  I was doing something productive in educating myself about what my future might hold.  After a month, the tingling faded.  Life went on with only an occasional nagging thought at the back of my mind about the possibility of having Multiple Sclerosis.

That summer, I abruptly developed an allergy to aspirin, Motrin, and Alleve.  I went from being able to take it just fine to being deathly allergic to it within a matter of a month or so.  Aside from finding it annoying, I didn’t think much about it at the time.  I had other allergies, mainly to pollen and pet dander.  I thought it was just another random allergy of mine.  It wasn’t until I developed an allergy to Tylenol the summer after my son was born that I began to think the sudden allergies might be related to a problem with my autoimmune system.  Now, five years later, the list of medications I’m developing allergies to continues to grow.  I’m averaging roughly one new medication allergy a year.

Shortly after my son was born, the tingling in my left hand returned.  It brought with it muscle spasms.  Once again, I found myself at the neurologist.  This time an MRI was scheduled to detect any possible Multiple Sclerosis lesions.  As can be expected, the MRI didn’t show any lesions.  A VEP that was done showed a slightly abnormal result in my right eye but I was told it wasn’t anything to be concerned about.  As a result, once again, the waiting game began.

I stayed in this relapsing/remitting cycle for three years.  Each time, the tingling and muscle spasms would get a little worse and last a little longer.  Each time, they would eventually completely go away.  It wasn’t until I moved to Texas that my symptoms began to take a downhill slide.

I know the sheer heat and humidity of Texas is responsible for the increase in my symptoms.  I’ve always been a tad heat sensitive, which is another reason it was suspected for so long that I had Multiple Sclerosis.  Like clockwork, every change in the seasons brought on a relapse.  Each time, new symptoms were added to the mix.

I went from experiencing only tingling in my hand and occasional muscle spasms to widespread tingling, muscle spasms, muscle cramps, fatigue, weakness, and tremors, primarily in my hands.  I’ve lost some of my sense of balance and nearly all reflexes in my feet.  I trip over things.  I have problems thinking, particularly where spelling and grammar are concerned.  Being a writer, having problems with spelling and grammar are particularly troublesome for me.

I began to notice that my symptoms stopped going completely away.  I wasn’t recovering like I had before.  Instead of a clear relapsing/remitting pattern, I was in more of a get-worse-then-plateau-a-bit pattern.  Needless to say, I sought a referral to a local neurologist from my family doctor.  All the while, I was still acting under the thought that I might have Multiple Sclerosis.  All of my symptoms seemed to fit that disease the best.

The first neurologist I saw was, quite frankly, a jerk.  He didn’t listen to a thing I said.  He focused solely on the tingling in my hand, even though I told him my tingling was more widespread than that.  He went so far as to say the tingling in my hand was caused by hyperventilation.  I’ve never hyperventilated in my life!  He outright ignored all of the other problems I’d been having.  When I left his office an hour later, I think I was at one of the lowest points I had ever been in.  I was so frustrated and angry.  He told me to see him again if I had any problems in the future.  That definitely wasn’t going to happen!

Thankfully, the next referral I received from my family doctor was to the neurologist I’m presently seeing.  When I first saw him, he thought it was possible that I could have Multiple Sclerosis but didn’t want to rule anything out.  A lot of tests were run.  After plenty of normal MRIs and blood work, an EMG revealed that I had widespread muscle damage in pretty much every muscle in my body.  As odd as that may sound, I was relieved to have an abnormal test result.  It was concrete proof that all the symptoms I’d been experiencing wasn’t just in my head.   Still, with no positive Multiple Sclerosis lesions on an MRI, my neurologist was hesitant to make any sort of official diagnosis.

Ultimately, it was my decision to begin taking a steroid pack my neurologist had prescribed to me “just in case my symptoms got worse between my six week appointments” that helped me receive a diagnosis.  The steroid pack gave me horrible insomnia but it also improved my symptoms dramatically, something I desperately needed.  I was having far more bad days than good.  I was losing my endurance and getting steadily weaker.  At my next appointment I informed my neurologist of the changes and what brought them about.  It was that improvement from the steroids, coupled with my various test results that caused my neurologist to diagnose me with Chronic Inflammatory Demyelinating Polyneuropathy instead of Multiple Sclerosis.

That diagnosis came two months ago.  Since then, I’ve started treatment for CIDP.  I don’t know what the future holds for me but I am determined to make it the best I can.

In the world of neuropathy and demyelinating diseases, tingling is a fairly common symptom. It’s often one of the first symptoms a person will start having.

What is it?

Tingling is a pins and needles, almost fuzzy feeling, most often felt in an extremity. It can range from a mild sensation to fairly strong.

What causes it?

There are many different causes of tingling. The most common cause is cutting off blood flow to an extremity, resulting it reduced blood flow to the nerves of that body part. The reduced blood flow to the nerves causes your arm or leg to “fall asleep”. As the blood returns to your body part, and ultimately the nerves, it causes the pins and needles feeling that you experience. Fortunately, in cases where a body part “falls asleep”, the tingling usually quickly goes away.

In the world of neuropathy, tingling is caused by damage being done to the nerves. Because the central nervous system is so complex, the nerves can be damaged in a wide variety of ways. Such as:

• Metabolic - Diabetes and hypothyroidism
• Nutritional - Alcoholism, B12 deficiency, and malnutrition
• Trauma - Injury to the nerves or central nervous system.
• Inflammation - Inflamed nerves and tissue swell, causing pinching and compression of nerves
• Connective tissue diseases - Arthritis, systemic lupus erythematosus (a disease that causes widespread chronic inflammation), polyarteritis nodosa (causes chronic inflammation of the arteries)
• Toxins - Arsenic, lead, mercury and other heavy metals, some antibiotics and chemotherapy agents, solvents, B6 overdose
• Infections - HIV, Lyme disease, leprosy
• Hereditary diseases - Charcot-Marie-Tooth disease (causes wasting of the leg muscles and malformation of the foot), porphyria (a group of disorders in which there is abnormally increased production of porphyrins), and Denny-Brown’s Syndrome (disorder of the nerve root)
• Stroke
• Tumor
• Demyelinating diseases - Multiple Sclerosis, CIDP, etc…

How is it diagnosed?

The doctor will usually ask a bunch of questions in order to obtain your medical history. Some of the questions might include when the tingling first started, where the tingling is located, how bad the tingling is, etc… A family medical history might also be taken in order to determine whether the tingling might be caused by a hereditary disorder. Any recent injuries to the area will also be discussed.

A variety of tests can be done by the doctor, as well. Physical and neurological exams will determine how widespread the tingling is and whether there is any loss of reflexes, feeling and strength in the affected areas. Blood and urine tests will be done to see if the tingling is being caused by a metabolic or nutritional problem. EMG and nerve conduction studies are done to see how much nerve and muscle function you have in the affected areas. A nerve biopsy might also be performed.

How is it treated?

How tingling is treated is determined by what’s causing it. If the tingling is being caused by metabolic or nutritional problems, the doctor can prescribe medication or a change in diet to get the symptoms under control. Aspirin or aspirin related medications can be used to bring down any inflammation. Pain medications might also be prescribed if the tingling is particularly bad or bothersome.

Some alternative treatments for tingling include vitamin therapy. B complex vitamins such as B6 and B12 are proven to help with nervous system function. When undergoing vitamin therapy, it is important to make sure an overdose is avoided. An overdose of vitamins, particularly B6, can make the tingling worse. Alcohol should be avoided as it tends to make tingling worse. Acupuncture and massage have been used to relieve symptoms. Self-massage and aroma oils can help. Topical ointments that contain capsaicin work, also.

My experience

Tingling was the first symptom I had. Since it first showed up in the palm of my left hand, my doctor suspected I might have carpal tunnel syndrome. It didn’t seem out of the realm of possibility since then, much like now, I spent a lot of time on the computer. My doctor referred me to a neurologist to get a nerve conduction study done on my left hand/wrist. It was that first referral that sent me on my five year journey in search of a diagnosis.

For the first few years, the tingling was isolated primarily to my left hand. Eventually, it spread up my left arm, to my left leg, then onto my right side.

That first bout of tingling lasted roughly a month before fading completely. I didn’t experience it again until a year later where it lasted for the same amount of time. It would follow this relapsing/remitting pattern for several years.

At first the tingling would go completely away. Then, with each relapse, it wouldn’t stop completely. It would get better but not be completely gone, almost like it would plateau a bit instead of healing totally. For the past couple of years, I’ve stopped the relapsing/remitting pattern and have started to just steadily go downhill.

I have tingling all the time in my arms, legs, sides, and face. The tingling on my sides and face are fairly faint. I don’t really notice them unless I’m having to focus on it. The tingling in my arms and legs is much more noticeable. I’ve become accustomed to it over the years. It only becomes annoying if the being-poked-by-pins-and-needles feeling turns into a sharper being-stabbed-by-thousands-of-little-needles feeling. Thankfully, that doesn’t happen often.

More information on tingling can be found here .

One of the things I’m endeavoring to do with this blog is to educate people on the various demyelinating diseases that exist. Since I have CIDP, I figured I would start there.

What is CIDP?

CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. It is the chronic version of Guillian-Barre Syndrome. CIDP, much like many other diseases that cause demyelination, is an autoimmune disorder. It’s not fully understood by the neurological community at large what triggers Chronic Inflammatory Demyelinating Polyneuropathy, although it is believed one possible trigger is catching the flu. The more acute form of Guillian-Barre Syndrome has the same trigger.

There are many different variants of CIDP, however they all fall under the same general umbrella. Like most diseases that cause neuropathy, they have similar symptoms. The differences lie in severity of some symptoms over others, presentation of the disease, and progression of the disease.

What does CIDP do?

CIDP attacks the myelin sheath that surrounds your body’s nerve endings. The myelin sheath is a soft, white, fatty material. It protects the nerve endings. It also acts as a conductor, allowing the nerves to send messages from the brain quickly around the body. As the myelin sheath is destroyed, damage is done to the nerves. This damage prevents messages from being sent quickly, if at all.

One of the reasons it’s suspected that CIDP can be brought on by a bout with the flu is because the cells that make up the myelin sheath are microscopically similar to flu cells. It’s theorized that the flu virus can trigger a hyperactive immune response from the immune system. In an effort to kill the flu virus and keep you healthy, your immune system goes on the offensive, not only attacking the flu cells but any cell that resembles it.

Unfortunately, once your body identifies the myelin sheath as an enemy invader, it will always recognize it as an enemy. There is no way to completely rid your body of the antibodies once they have been formed. You can only attempt to minimize and heal the damage already done.

What are the symptoms of CIDP?

The most common symptoms of Chronic Inflammatory Demyelinating Polyneuropathy and its variants are:

• Tingling, most often in the hands, arms, feet, and legs
• Numbness
• Muscle spasms
• Muscle cramps
• Loss of reflexes
• Problems walking
• Weakness
• Fatigue

It’s not uncommon for people with CIDP to have other neurological problems such as skin that’s sensitive to the touch and issues with incontinence, though.

How is CIDP diagnosed?

Because Chronic Inflammatory Demyelinating Polyneuropathy is a rare disease, there’s no one set testing protocol like there is for Multiple Sclerosis. There are a series of tests that a neurologist can do but it’s often by a process of elimination that someone winds up with a diagnosis of CIDP. Here are some of the more common tests that can be performed to test neurology function:

• EMG/Nerve Conduction Studies
• Lumbar Puncture
• MRI
• Reflex and Balance Tests

I will be going into greater detail on what each of these tests entails and what they measure in future blog posts.

What is the treatment for CIDP?

Right now, there aren’t many treatment options for Chronic Inflammatory Demyelinating Polyneuropathy or any of its variants. The most common are:

• IVIg
• Plasmapheresis
• Steroids
• Chemotherapy

I will be making detailed blog posts about CIDP’s variants and treatment options in the days ahead.

Should anyone have any questions, please feel free to ask them. I don’t pretend to know all the answers but I’m happy to research whatever I need to. If you’re feeling a little shy, a good online resource of information and support about CIDP can be found at the GBS/CIDP Foundation International .

I have Chronic Inflammatory Demyelinating Polyneuropathy, or CIDP. It is the chronic form of Guillian-Barre Syndrome. Similar to Multiple Sclerosis, it’s an autoimmune disease that causes demyelination of the nerves, resulting in a whole host of neurological problems. It’s also a rare disease, affecting an estimated 1-2 people in 100,000, with few treatment options.

I was diagnosed with CIDP roughly two month ago. Two weeks before my 30th birthday, in fact. I’ve been having symptoms for over five years. Tingling, muscle spasms, muscle cramps, numbness, problems with balance, and weakness among other things had all become an increasingly constant part of my life as the years went on. I went through numerous tests and a handful of neurologists in my search for an answer of what was wrong with me.

When I finally received the long sought after diagnosis, it was like someone had lifted a weight from my shoulders then promptly socked me in the stomach with it. I had an answer but I also had a disease from which there is no cure, only treatments to try to stop and heal the damage being caused. My body had decided that it was its own worst enemy. Immune systems designed for good were causing harm. Once triggered, there was no going back to “normal”. CIDP is my new normal.

Since my diagnosis, I have done countless hours of research. In my research, I have discovered there are many neurological diseases that have similar symptoms and cause demyelinating of nerve endings. While each disease has its individual charities, research, and support groups, I haven’t been able to find much in the way of a “one stop shop” for information and support. It’s my intention to create such a spot with this blog.

Even though I have CIDP, I will be posting information on other neurological diseases like Multiple Sclerosis and the like in addition to CIDP. I will be posting information on research and treatment options for demyelinating diseases in the hope that people dealing with all neurological, nerve diseases will find it useful.

This will also be a place for support. We all have our good and bad days. Even loved ones and caregivers of people with these chronic diseases will find support here.

I will post about my experiences living with CIDP from time to time. It’s my hope that by being brutally honest about the ups and downs this disease causes will help ease the anxiety of others. One of the hardest things about living with a disease like CIDP is the sheer uncertainty of it. Because of the highly personal nature of these diseases, everyone’s prognosis will be different. Still, I think being able to see what my life is like will give peace to others, especially those who are newly diagnosed.

We didn’t choose to have these diseases but we can choose how we deal with them. Even when your body is weak, you can be strong in spirit. You may be demyelinated but you are not destroyed.