Guillain Barre Residuals
Every Guillain Barre survivor has at one time or another thought, “Is it coming back?” In fact most serious diseases evoke that thought more than once. Guillain Barre, unlike cancer, does not usually come back. At the GBS/CIDP International symposiums I’ve attended over the years, neurologists who specialize in treating patients with GBS or CIDP have asserted that only extremely rare cases of recurrence have been noted.
What, then, do we make of all these strange symptoms and abnormal sensations that occur long after we’ve dealt with Guillain Barre? And how does Guillain Barre affect us years after the initial onset and how do we deal with it as we age? These are questions that the medical community has yet to address fully.
Symptoms and sensations vary widely in post recovery just as they do during the ascent and recovery stage of GBS. Joel Steinberg, American physician and GBS survivor has stated that “well over 50 percent of patients will eventually reach recovery or complete recovery and resume their prior lifestyles. Perhaps 35 percent will experience long-term abnormalities such as foot drop or numbness.” I’ve found, in talking with GBS survivors that complete recovery is a loosely held term. For example,the mention of foot drop validates my theory that whatever was damaged or changed during the destruction part of GBS—the part where the myelin coating on the axons is eaten away—will never be the same. I’ve never seen that statement in any of the literature, at least not put so bluntly. And it’s not something I would drop suddenly on a newly recovering GBS patient.
Foot drop does not sound like a life-changing event. However, if the muscles in that part of the leg are not receiving strong directions from damaged nerves, the foot may drag and we may trip, sometimes with dire results. My physical therapist reminded me early in my recovery that damaged myelin grows back slowly and experience and research has revealed that myelin is never as strong or effective once it has been damaged. Numbness is another concern; GBS survivors I’ve talked with have remarked that they can gauge their level of fatigue by how much their feet—and/or fingers—tingle.
Neuropathy is a prominent component in post GBS recovery. Nerve damage is characterized by numbness and tingling and can be especially troublesome at night or early morning. A burning sensation that intensifies during sleep and continues to some degree during the day is a strong residual that has returned in my life as I age. Gabapentin—the generic version of the drug Neurontin—is a good tool for dealing with post GBS neuropathy if you don’t overdo the dosage. For me 300 mg at bedtime assures a good night sleep. During the recovery phase of GBS—while the myelin is regrowing– a total of 1,800 mg within 24 hours is not uncommon.
This brings us to moderation. Like it or not post GBS life involves a certain amount of moderating and monitoring our physical exertions. As we age, physical exertion becomes less facile in the best of circumstances, but for GBS survivors physical exertion extracts its price if carried to excess. The trick is to understand how much stress our body will endure before numbness and pain set in. Further complicating the matter is that we don’t receive immediate feedback from overdoing. Rather, the residuals do not make themselves known until the second or even the third day after over doing exercise.
If pain was the presenting symptom of GBS the part of the body most affected by nerve damage is the most fragile. If axonal damage has occurred, as it can in even a light case such as mine (light case means we did not spend time on a ventilator) the axon will leave a feeling of tenderness in that part of the body. Dr. Gareth Parry, an American physician who writes widely and specializes in researching and treating GBS and all its forms published a paper in the spring 2000 edition of The Communicator, the newsletter of the GBS/CIDP Foundation International. Dr. Parry states that “the basis for semmingly minor residual symptoms (fatigue and pain) is probably axonal degeneration.” Fatigue ensues when “the muscle must work harder to achieve its goals.”
Dr. Parry and Dr. Steinberg have written a book that has been published by the AmericanAcademyof Neurology. Titled Guillain-Barre Syndrome the book offers a comprehensive view of this strange disease for which there is no known cure, only therapies to lessen the severity of the illness and speed the recovery process in many patients. Both these physicians are on the medical advisory board of the GBS/CIDP Foundation. To learn more about GBS and CIDP and the Foundation go to www.gbs-cidp.org.