Re: Guillain Barre

---

---

Posted by CCF Neuro MD on July 17, 1997 at 22:20:28:

In Reply to: Guillain Barre posted by Roxie on July 09, 1997 at 00:18:22:

I first had this in 1989, right after a heavy bout of the flu.
I had two recurrences, one in 1993, and another just last Easter (1997).
They both came after recovering from the flu. My questions are: Does the flu
virus bring these attacks on? What is the best method of treatment for my \
case wherein it is not too severe (partial loss of muscle/nerve control of extremities
but I can function normally. Steroids seem to work but I hate the side
effects. Vicodin keeps the cramping pain in check before I sleep. Is prolonged
use of this (Vicodin) bad? It's my only source of relief. Lastly, this last bout
affected my taste buds so badly that I haven't regained my full sense of
taste. In 1989, my tastebuds were affected but recovered after a week.
This time, it's been more than 2 months and it's still abnormal. What can I
do to fix it? I've given up hope of ever losing the numbness in my fingers
and feet. Is this realistic? If you know of any other forums specifically
for Guillain Barre, please let me know how to reach fellow sufferers.
THANK YOU!!!!!

---

Hello, Roxie,
Guillain-Barre syndrome (GBS) occurs in all parts of the world and in all seasons. A mild respiratory or gastrointestinal infection precedes the symptoms by a couple of weaks in about 60 percent of patients, like in your case. Recently, lots of viruses have been associated with GBS, including cytomegalovirus, E-B virus, HIV, and campylobacter.
The treatment of GBS varies depending on the stage of the disease. In the acute stage, respiratory assistance and support of blood pressure are imperative. These measures are usually acompanied by the use of either plasma exchange or immune globulin. Following the aggressive management and close monitering, a majority of patients recover completely or nearly completely. However, a small group of patients (about 10 percent) will have residual symptoms such as weakness in the feet and legs. Although the involvement of cranial nerves (nerves to the head and face) are quite common, the severe and persistent affect to the taste sense is rare. Unfortunately, not much can be done to speed up the recovery.
As far as the management of your weakness (partial loss of motor control), physical therapy can be tried. Another disease that can present as a relapsing and recurrent neuropathy is a chronic form of GBS called chronic inflammatory demyelinating polyneuropathy (CIDP). However, usually CIDP is not proceded by viral/flu-like episodes. An important reason to tell them apart is that CIDP can be treated with steroids which is no more used in GBS.
You have been using vicodin for sleep. Vicodin is the combination of hydrocodone and acetominophen. Therefore, it is a narcotic analgesic,and potentially addictive. If it is for sleep, you may want to switch to a nonnarcotic OTC sleeping pill.
Having said all that, the bottomline is that you need a full neurological evaluation to reestablish the baseline and to explore the all aspects of your diagnosis and care. This can be done at your local neurologist's office, or if you are able to come to Cleveland area, we are happy to offer you an appointment with one of our GBS specialists. Please call toll free (800) 223-2273 ext. 45559 or (216) 444-5559. Good Luck.
Lastly, I am not aware of any support group for GBS, but I will keep looking, if anything comes up, I will pass it on to you.

This information is provided for general medical education purposes only. Please consult your physician for the diagnostic and treatment options of your specific medical condtion.

---