Demyelinated not Destroyed

Socialstyrelsen in Stockholm, Sweden is presently doing research on CIDP.

From their website:

The Neurology Clinic at Karolinska University Hospital and Linköping University Hospital are conducting research projects on CIDP. Current projects aim to investigate changes in immunological characteristics of white blood cells as well as neuropeptides and nerve growth factors in blood, spinal fluid, and nerve tissue. There is also an on-going physiotherapeutic long-term study of CIDP patients which aims to map the degree of disability over time, and to develop new methodology and scales to measure the effect of CIDP treatment. For more information please contact Dr. Rayomand Press, (see contact details under the heading “Resource personnel”), and Professor Jan Ernerudh at the Departments of Neurology and Immunology at Linköping University Hospital.

For more information, please click here .

There is also a TON of information posted about CIDP at the link. While the medical jargon might be a bit heavy for some, it’s definitely worth a read.

---

Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International

---

Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

While stuck in the throes of insomnia last night, I finished creating several separate pages that are attached to the Demyelinated not Destroyed blog page. Here’s a hint of some of the information that’s now available at demyelinatednotdestroyed.today.com

• Definitions – A list of commonly used words and abbreviations concerning demyelinating diseases. I made a supreme effort to ensure all definitions are worded in ways that the average person can understand.

• List of Demyelinating Diseases – A list of diseases and disorders that can cause demyelination. Links to any blog posts explaining about any of the diseases are included in the list for easy reference. It is still possible to search for information about these diseases by clicking on “Demyelinating Diseases” under the Categories section.

• Symptoms – A list of common and uncommon symptoms experienced by those living with demyelinating diseases. Links to any blog posts detailing information about the symptoms and ways to alleviate them are included for easy reference. As with the list of demyelinating diseases, all of this information can still be found by clicking on “Symptoms” under the Categories section.

• Treatments – A list of common and uncommon treatments for demyelinating diseases. This list is broken down into western medicine and alternative medicine categories. Links to any blog posts giving information on the various treatment options are included. All of this information can still be found by clicking on “Treatments” or any of its sub-categories under the Categories section.

If anyone knows of anything that needs to be included on these new pages or has recommendations on other pages I should create, please let me know.

I also updated my blogroll yesterday. There are links to three new blogs, four new charities, and one new store. I added the following categories: “Support Communities” and “Websites”. “Support Communities” presently has four different links, each one going to a messageboard where people living with, or who have loved ones living with, demyelinating diseases of various kinds can find support. “Websites” has one link and is for links to any websites I want to include for various reasons but doesn’t fit in any of the other categories.

I’m presently debating creating a separate website to house all of this information along with a messageboard. The messageboard would be for additional support of people having to deal with a demyelinating disease in one way or another. It would also make it easier for me to interact with my readers. The blog would still be hosted by Today.com. Any new entries would be accessed by an RSS reader on the website or directly at Today.com. What do you think? Do you think a separate website would be beneficial? Or should I just stick with the present format?

On a side note, anyone in need of extra cash (who isn’t right now?) should sign up for a blog on Today.com. You get paid per post and for the amount of page views your blog receives every month. It’s also very easy to use. If you’re interested, you can find out more information or sign up for your very own Today.com blog here .

---

Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

Having a sensitivity to heat and/or cold can be one of the more frustrating symptoms of demyelinating diseases.  Checking the weather report becomes a necessity every day, not just when you’re planning a picnic or a trip to the lake with your family and friends.  Even the most beautiful of days can become an enemy, depending on how hot or cold it is outside.

What is it?

For those with demyelinating diseases, temperature sensitivity is a temporary worsening of symptoms whenever you get too hot or too cold.  When your body temperature returns to normal, your symptoms improve.  Most people with demyelinating diseases have a sensitivity to heat although it is possible to have a sensitivity to cold or both hot and cold.

What causes it?

There are many different causes of temperature sensitivity.  Depending on circumstances, the occasional sensitivity to hot or cold is perfectly normal and not cause of concern.  However, if the temperature sensitivity is a symptom you haven’t experienced before, it’s definitely worth it to get checked out by a doctor since temperature sensitivity can be an indicator that something serious is going on.

• Demyelinating diseases - Multiple Sclerosis in particular is known for causing temperature sensitivity
• Fever - Can be from the common cold and the flu
• Hot Flashes - Menopause and perimenopause
• Infection
• Cold Sweats or Chills
• Thyroid Disorder
• Depression
• Anemia
• Migraine
• Panic Disorder

These are just some of the various causes of temperature sensititivity.  For a more complete list, you can visit:  Wrong Diagnosis

What causes the worsening of demeylinating disease symptoms with Temperature Sensitivity?

A change in body temperature, particularly an increase in body temperature, makes it harder for your nervous system to send messages around the body.  If your nerves are already damaged due to demyelination, even a slight increase or decrease in body temperature can make it even more difficult for your central nervous system to do its job.

It’s important to note that once your body gets back to its normal temperature, the worsening of your symptoms should subside.  While no additional demyelination is done to your nerves during a temperature sensitivity induced worsening of symptoms, you still need to be cautious as it can cause exhaustion and even heat related problems such as heat stroke.

How is it diagnosed?

When dealing with temperature sensitivity, a doctor will rely heavily upon you, your medical history, and your experiences.  That’s why it’s especially important to make note of instances where you believe heat and/or cold played a role in worsening your symptoms.  Remember, if you have a demyelinating disease, your symptoms should return to “normal” when your body returns to its normal temperature.

If you believe your temperature sensitivity is because of some other cause, you still need to make a note of when the temperature sensitivity happened, what was going on at the time (were you sick, had a migraine, etc…), what the weather was like if you were outside, whether the sensitivity was to heat or cold, how long it lasted, and what, if anything, made it better.

A test that you can try at home if you are worried you might have temperature sensitivity due to your demyelinating disease is to take a hot bath or a quick dip in a hot tub.  If you’re symptoms get worse while you’re in the bath/hot tub and then get better when you get out, you have a temperature sensitivity to heat.  An interesting thing about this “hot bath” test is it was routinely one of the ways used by doctors to diagnose Multiple Sclerosis for many, many years.

How is it treated?

If your temperature sensitivity is due to migraines, anemia, menopause, panic disorder, depression, thyroid disorder or a bacterial infection, medication will be prescribed by your doctor to help with it.  If it’s due to a viral infection, you’ll just have to ride it out, boost your immune system as best as you can, and get lots of rest.

If  your temperature sensitivity is due to a demyelinating disease, the best thing you can do is try to avoid getting overheated or too cold.  Staying inside and using the air conditioner or heater is the best way to keep from causing a temporary worsening of your symptoms.  If you have to be active outdoors on a hot day, drink plenty of fluids, rest in the shade often, and use ice packs to cool your body down if you feel yourself getting overheated.  On cold days, bundle up and stay as warm as you can.  Whatever you do, don’t overdo it.  Rest often!

My experience

I’ve been a bit prone to getting overheated easily ever since I was little.  As one might expect, that hasn’t improved as I developed CIDP.  The hot, muggy summers where I live can be brutal for me, at times.  Since moving to a milder climate is out for the time being, I deal with my heat sensitivity as best as I can by trying to stay hydrated whenever I’m outside, resting often, and keeping an emergency stash of instant ice packs in my car.  If I start to feel like I’m getting overheated, I’ll place one of the ice packs on the inside of my wrists to get cooled down.  I try to avoid getting overheated as much as possible since it completely drains my energy and leaves me exhausted afterwards.

For more information, visit any of these links:

http://www.wrongdiagnosis.com/sym/temperature_sensitivity.htm#causestypes 

http://www.mothernature.com/Library/Bookshelf/Books/16/223.cfm 

http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/exacerbations/heattemperature-sensitivity/index.aspx

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.

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!

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 .