Diagnosis, symptoms, recovery….

May 8, 2010 at 6:39 am

Dear Caregiver 714,

After the eradication of polio, Guillain-Barre syndrome is the number one cause of acute flaccid paralysis worldwide today. The problem is that General Practitioners, Emergency Room Doctors, and some Neurologist do not recognize the symptoms of GBS. A quick diagnosis with fast treatment of either plasmapheresis or IVIG will determine the extent of damage to a patient’s myelin sheath and their recovery time. It could mean the difference between months or years…and the amount of residual damages to the patient. The secret is a better education of the symptoms of this devastating and catastrophic disease to all doctors so a quick diagnosis can be made and treatment with either IVIG or Plasmapheresis can be started as quickly as possible to prevent long term residual damages.

Just over 13 years ago on Dec. 26th, 1996, my life as I knew it changed forever. I collapsed in my bedroom with both legs paralyzed. My wife, Rosemary, called an ambulance and I was taken to the hospital. The paralysis began to move up my body, and within 4 days my breathing muscles were paralyzed, I had difficulty swallowing, and I had a feeding tube inserted in my stomach. I suddenly found myself “locked in, totally paralyzed and closed out of the life I had known.” The only parts of my body that moved was my eyelids. I had a tracheotomy and was hooked to a respirator that breathed for me. I had a neurological disease called Guillain-Barre syndrome. Unfortunately I was misdiagnosed and did not receive either treatment of IVIg or plasmapheresis. The two neurologists thought my paralysis was caused by problems in my cervical spine and focused all their effort in that area…even after my breathing muscles became paralyzed, and I became totally paralyzed?

On January 7th, 1997 just a little over 2 weeks later: I had GBS (not diagnosed), I had another neurological disease, Transverse Myelitis (not known at the time), I had a blood staph infection, staphylococcus aureus (but the exact type staph infection unknown), I had internal bleeding (source unknown), I had pneumonia, a temperature of 107.9, blood pressure of 44/0 by Doppler (would not register by cuff), an EEG (brain scan) that showed “no activity”, and I was in a coma. It was approximately 3:00 AM in the morning and the doctors told my wife and sons that everything medically and humanly possible had been done, but there was “no hope” for me. The doctors then told my wife to make arrangements for a post-mortem so they would know what “killed me”. But Rosemary did not make those arrangements. Instead, she called our Pastor at 5:00 AM and when he arrived my family and a few close friends that were there circled my bed and prayed for a miracle…I was spared by the Grace of God. The Neurologist did know at this time I had GBS because the staph infection was Endocarditis, an infection that attacks the valves of the heart. I have heart problems, so they called my cardiologist. He is from India and as an adolescent his cousin had GBS, so when he saw me in my condition, he said, “this man has Guillain-Barre syndrome.” However, in this condition neither IVIg or plasmapheresis could be given.

As soon as I had the dexterity to move my fingers I started doing my own research on the Internet, and I studied GBS, CIDP, and other autoimmune diseases every day for more than 8 years. I learned that in severe cases of GBS the reflexes of the brain stem may be paralyzed, thus giving a false positive EEG…and I am sure the “no activity” report influenced the neurologist decision to “pull the plug” on me, and telling my wife to make arrangements for a post-mortem. I am also sure the neurologist “Did not know that the brain stem reflexes could be paralyzed from severe cases of Guillain-Barre Syndrome.”

The GBS progressed into a chronic form of Guillain Barre syndrome, CIDP: Chronic Inflammatory Demyelinating Polyneuropathy. My body continues to produce antibodies that attack my myelin sheath today. I get regular infusions of IVIg, Intravenous Immunoglobulin (Gamma) that stop the attack. I do not have 100% leg strength because of axonal nerve cell damage. I have about 70% of my leg strength as a residual effect of GBS and CIDP and that is after the infusion of IVIG when my strength is at it’s max…and will stay at it’s max for approximately 21/2 weeks, then starts to decline, and after the 4th week I am at my lowest level without using a wheelchair and I get another infusion.

As you can see from my experience, I was not diagnosed and I did not get treatment of either IVIg or plasmapheresis at the onset of my GBS and I have residuals that will last forever. And I even self diagnosed my CIDP but did not have any luck convincing my GP or neurologist. I finally made my own appt at the University of Louisville Neurology Dept. They did an EMG/NVS and diagnosed me CIDP and began IVIg treatments…and I have been getting IVIg since.

Warmest regards.