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.

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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

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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 .

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While updating my blogroll, I stumbled across something that could be extremely beneficial to people living with CIDP. Northwestern University is presently recruiting participants for a stem cell based treatment for CIDP. It’s important to note that this clinical trial is for people who are not responding well to traditional CIDP treatments. You also have to be 65 years or younger in order to be considered for the clinical trial.

More information concerning the clinical trial through Northwestern University can be found here.

I know the use of stem cells is a hot-button, political topic. I don’t want to get into a debate of whether or not stem cells should be used here. Everyone is fully capable of examining their own moral code to determine whether or not they would feel comfortable participating in such a clinical trial. I’m merely posting information about the clinical trial in case it can benefit any of my readers presently living with CIDP.

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One of the things I’ve noticed in my years of searching for a diagnosis and researching information on the demyelinating disease that I have is how important message boards are. People looking for answers, longing for support, or seeking advice congregate on these forums. For people with disabilities caused by demyelination or living in remote locations, message boards are often the only place they have to turn to when they need information related to their demyelinating disease.

While I tend to be what most would call a lurker, there are several message boards I’ve been known to frequent and post to, especially during the five years I was in “limbo land”. Forums, message boards, and blogs have proven invaluable tools for me to use throughout my years of living with Chronic Inflammatory Demyelinating Polyneuropathy. I am sincerely grateful they exist and consider all those I’ve met in my online travels to be blessings.

For all the good message boards can bring, there is one trend that I’ve noticed that really has me worried. Many members, especially those who have been living with a demyelinating disease for many years, feel the need to give medical advice to those seeking information on the course of their disease or treatment for the demyelination that’s occurring. This is an exceptionally dangerous practice and one that I feel needs to stop.

For starters, unless you’re a doctor and the person seeking information is a patient in your care, giving medical advice is illegal. It’s tantamount to practicing medicine without a license. Needless to say, this is something that is heavily frowned upon by authorities.

It’s also potentially deadly. Most people don’t make a habit of detailing out their entire medical histories, complete list of medications, allergies, diet, and the amount of exercise they do daily when asking for advice on a message board. That means anyone giving medical advice is doing so with only a very limited amount of information. It’s very possible what’s advised could seriously injure or kill a person. If someone follows the medical advice given and winds up hurt because of it, the person who gave the advice could be liable for any and all damages.

For example, Joe goes to a message board and says, “My doctor doesn’t have me pre-medicating before I take IVIg and I keep getting really sick whenever I have to get it. Anyone have any advice on how to lessen the IVIg side effects?”

Jane replies with, “That’s dumb! You really need to pre-medicate. I take x, y, and z whenever I have IVIg and it helps a lot with the side effects. You should do that. It’ll help.”

Joe decides to take Jane’s advice. Before his next round of IVIg treatment, he takes the medication that Jane recommended. Unfortunately, later that night, Joe winds up in the ER because the medication Jane recommended had a life-threatening interaction with other medication he was taking. That possibility for a life-threatening interaction was precisely why Joe’s doctor didn’t have him pre-medicating with x, y, and z.

So, what are we to do if someone looking for answers for the demyelinating disease they have comes to us for help? How best can we support them? Do we ignore their pleas for information and advice? Of course not! We can still support those who need it and give them the information they want. We just need to do it by sharing our experiences instead of giving medical advice.

When we share our experiences we tell others about our journey with demyelination and the various struggles and triumphs we’ve had along the way. We share the information we’ve gained and let others know the treatments that have worked for us. Most of all, we encourage others to continue their search for information and to discuss the discoveries they make along the way with their doctor.

This is how the above situation could look if Jane shared her experiences instead of giving medical advice to Joe:

Joe goes to a message board and says, “My doctor doesn’t have me pre-medicating before I take IVIg and I keep getting really sick whenever I have to get it. Anyone have any advice on how to lessen the IVIg side effects?”

Jane replies with, “I used to get really sick whenever I had IVIg until I started pre-medicating with x, y, and z. They’ve really helped a lot to lessen the IVIg side effects I had. You should talk with your doctor about pre-medicating with them before your next round of treatment.”

Joe speaks with his doctor and discovers why he isn’t being pre-medicated with x, y, and z before receiving IVIg. In talking with his doctor, Joe discovers other alternatives to pre-medicating that might help with the side effects he’d been having. He returns to the message board and says, “Jane, thanks for the information but it turns out I can’t take x, y, and z because it can cause problems with some of the other medication I’m on. My doctor recommended I do a, b, and c beforehand, though. I’ll let you know how it goes after I receive my next round of IVIg. Thanks again!”

Sharing our experiences also encourages people living with demyelinating diseases to be proactive about their health. It encourages them to talk to their doctors about their symptoms and the treatments that are available to them instead of simply waiting for instructions.

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One of the greatest tools a person with a demyelinating disease can use when it comes to treating their disease is keeping a medical journal. It’s simple and quick to do, yet the impact it can have on how your demyelinating disease is treated is astounding.

What does it do?

Keeping a medical journal allows you to track your symptoms.  There are two approaches to keeping a medical journal.  You can:

1. Track just your symptoms and how they change on a daily basis
2. Track all of the following:
   • Amount of food eaten, what kind, and when
   • Amount of water drunk
   • Activities (grocery shopping, doctor’s appointment, gardening, etc… )
   • Amount of exercise
   • Amount of sleep
   • Medications and supplements taken
   • Severity of symptoms
   • Any observations on what made your symptoms immediately worse, better, etc…

Obviously the second choice, while being a little bit more time consuming, would give you and your doctor the best overall view of your health, what makes the symptoms for your demyelinating disease worse, and what makes them better.

Why is it important?

The biggest problem that faces people with demyelinating diseases is how often their symptoms can change.  For some people, their symptoms will get noticeably better or noticeably worse fairly quickly.  For others, the changes will happen gradually over time.  Gradual changes can be especially difficult to deal with when you have a demyelinating disease.  Because you get steadily worse over a long period of time, it can be extremely difficult to pinpoint when your symptoms began to worsen.

Also, most people with demyelinating diseases have a lot of doctor appointments.  If you try to rely on solely on your memory when your doctor asks for details about your symptoms and how you’ve been feeling since the last appointment, you can forget to tell them something important.  If your doctor doesn’t have all of the information on your overall health, they can’t come up with the best plan of care for you and your demyelinating disease.  Even the smallest details can have a large impact on your treatment plan.

Things to keep in mind

Keeping a medical journal doesn’t have to be a time consuming experience.  Take 15 minutes, each day, before you go to bed to jot down the things you’ve done that day, rate how your symptoms are, and make note of any significant changes or odd feelings.

When you go to your doctor appointments, bring the journal with you.  Better yet, make copies to give to your doctor of the medical journal entries you’ve made since your last appointment.  Those copies can then become part of your medical record.

My experience

I try to chronicle any significant changes in my symptoms on my computer.  I’ve found it extremely helpful for me to read over past entries in order to get a gauge of how my CIDP and various CIDP related symptoms are doing.  Admittedly, I could get much better about making my journal entries every day.

As a special note, I decided to file “Keeping a Medical Journal” in the Treatment category because it can impact how your doctor treats you and your demyelinating disease.

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.