Thursday, March 11, 2010

Guillain Barre Info

It's been brought to my attention (and thus occurred to me ;) that I probably haven't explained Guillain Barre Syndrome or GBS very well. That is, what it is, and where it came from. In all likelihood, it has been caused by the 9 cycles of the experimental drug SGN-35 I received over the last several months. There are only 2 other people who've developed this condition out of over 300 people in the world who've tried the drug, what luck!

Here's a clip for GBS I found on the net:

Definition
By Mayo Clinic staff

Guillain-Barre syndrome is an uncommon disorder in which your body's immune system attacks your nerves. Weakness and numbness in your extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body.

The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness such as a respiratory infection or the stomach flu. Luckily, Guillain-Barre syndrome is relatively rare, affecting only 1 or 2 people per 100,000.

In its most severe form, Guillain-Barre syndrome is a medical emergency requiring hospitalization. There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. And most people do recover completely.

Causes
By Mayo Clinic staff

The exact cause of Guillain-Barre syndrome is unknown. In about 60 percent of cases, an infection affecting either the lungs or the digestive tract precedes the disorder. But scientists don't know why such an infection can lead to Guillain-Barre syndrome for some people and not for others. Many cases appear to occur without any triggers.

In Guillain-Barre syndrome, your immune system — which usually only attacks foreign material and invading organisms — begins attacking the nerves that carry signals between your body and your brain. Specifically, the nerves' protective covering (myelin sheath) is damaged and this interferes with the signaling process, causing weakness, numbness or paralysis.


Like I mentioned, mine most likely wasn't caused by an infection but the drug although no one has been able to explain why...

I have a feeling that if this eventually goes away, it's going to take months. I just have to continue to adjust to being disabled. That said, I'm going to keep rolling...

I can't help but wonder what may come next... I guess you could say that I've become a bit cynical.

Thanks for the support :)

3 comments:

ConundrumChum said...

I have started following your blog, because of the title. I am sorry you are going through all this. I have metastatic breast cancer and know the evils of cancer. Hang in there.

Angie Nader said...

WOW!
i agree what luck!
i hope the side effects go away soon for you!

Anonymous said...

Dam Chris. It's heartbreaking to hear that you have yet another cross to bear. I was hoping the pain would go away as soon as you went off of the trial. For what it's worth, please know that although I haven't been an active poster on your blog, (dealing with some pretty annoying hand neuropathy myself) I am still here rooting for you and always checking in to see how you are. I'm hoping and praying that you can put this GBS behind you and get back to your life. Wishing that your upcoming visits with Dr.O and Dr. Younes will give you plenty of options for your next step in beating this back down. You are a real trooper Chris, an inspiration. All the best, Maureen