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 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.