Demyelinated not Destroyed

It’s a little late, but I am making the demyelinating disease up for discussion this month CIDP. I just felt that with the new blog schedule I posted yesterday it would be appropriate to name a demyelinating disease to be focused on for this month. Given that there are only a few weeks left in December, Chronic Inflammatory Demyelinating Polyneuropathy was the natural choice. A lot about it has already been discussed on this blog and will be discussed in the future when I share my experiences so only having a few weeks won’t be an issue.

A little bit about CIDP, it’s symptoms, treatment, and other information can be found here .

The charity in the spotlight this month is the GBS-CIDP Foundation International. Information on it can be found here .

With those two topics already covered, that means this post is going to be dedicated to a Blog Review!

The blog being reviewed is: CIDP And Me

What is the blog about?

CIDP And Me provides a snapshot of one woman’s life experiences and how CIDP affects them. She chronicles the various highs and lows of her life with humor and hope, creating an engaging read that everyone can relate to, regardless of whether or not they are living with a demyelinating disease.

How often is it updated?

A few times every month, making it perfect for those who may not have a lot of time to devote to daily blog reading.

Can I subscribe to it?

Yup! There’s a link to subscribe to an e-mail newsletter of the blog posts on the blog. I can’t find a link to subscribe to it via an RSS Reader but I’m pretty sure those a little more blog savvy than me will be able to set it up as some sort of RSS feed.

Overall

Kristen, the blogger behind CIDP And Me, is a wonderfully sweet woman and a talented writer. Normally upbeat and positive, CIDP And Me is a great blog to read for hope and inspiration. Since CIDP progresses differently in everyone, it’s important to read as many personal experiences as possible in order to get some sort of idea of what to expect when living with such a disease. CIDP And Me is definitely a blog everyone should check out!

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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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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.

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 .