Illustration of Nerve Before and During GBS

This is a great illustration of what happens to the peripheral nerves with GBS. Some of the best information comes from support groups, this is no different, it is from a GBS support group based out of Tasmania.

Figure 1a and b. Myelinated motor nerve fibres in peripheral nerve.
(a) top. Normal myelinated fibre with nerve impulse being conducted from
node to node, causing muscle contraction.
(b) bottom. Autoimmune attack on myelin causes a block in nerve conduction,
preventing muscle contraction. Illustration for Modern Medicine by Chris Wikoff

Jen DeWolf

Take Charge! Report Your GBS!

It is time for GBSers to take charge! Hospitals are supposed to report every case of GBS to state health departments and the CDC, however many times it is not. It is essential to get your case reported to provide researchers with more accurate number of cases. Was your GBS the result of a vaccine, bacterial infection, or just out of the blue?

If your GBS was the result of a vaccine, the CDC is a cosponsor of Vaccine Adverse Event Reporting System. "Anyone can file a VAERS report, including health care providers, manufacturers, and vaccine recipients. The majority of VAERS reports are sent in by vaccine manufacturers (37%) and health care providers (36%). The remaining reports are obtained from state immunization programs (10%), vaccine recipients (or their parent/guardians, 7%) and other sources (10%). Vaccine recipients or their parents or guardians are encouraged to seek the help of their health care professional in filling out the VAERS form. Each report provides valuable information that is added to the VAERS database. Accurate and complete reporting of post-vaccination events supplies the information needed for evaluation of vaccine safety." Visit VAERS website to learn more.

All other GBS cases should be reported in accordance with your local or state's health department. The CDC especially requests vaccine related GBS in children 11-19 be also reported to state health departments. Many times reports of GBS are required to be filled out by a neurologist, so just print out the form for them to fill out and give back to you to send back. Here is an example of a Guillain-Barre Syndrome Case Report Form from Los Angeles, CA.

J.D.

Pain and Guillain-Barre

For many people, including myself, the pain that is endured during the onset of GBS can be more difficult to deal with than the realization of becoming paralyzed. Speaking with other GBSers, there seems to be different stages and levels of pain one does or does not experience. For me, the pain was excruciating from the start and finding relief proved to be a frustrating and sleepless process. After being given countless medications to no effect, I was put on a Morphine drip. Thankfully, that did the trick because I honestly don't know how much more I could of taken. I feel that a big part of why it took so long to find a solution was because I couldn't accurately describe my pain. Looking back now, I wondered if there was anything online that may of helped to classify my pain level or category of pain I had. In my search, I came across neurology.org, listed was a classification of different levels and types of pain described on a medical scale.

This is the Neurology.org mission statement: "Neurology® will provide clinical neurologists with outstanding peer-reviewed articles, editorials and reviews to enhance patient care, education, clinical research and professionalism."

Here is the link on pain: neurology.org

Hopefully this will help others the way I feel it could of helped me!

J.D.

New Blog: Information and Support for Guillain-Barre Syndrome

Hi Everyone,
This is the beginning of what I hope to be an informational and supportive blog for Guillain-Barre Syndrome survivors, family and friends. As many of us survivors know, GBS can be full of unanswered questions that are sometimes only answered by those who have also experienced GBS. This blog is a long time coming and will continue to be a work in progress, so stay tuned!

Thanks,
J.D.